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AIM: The aim of this study was threefold: (1) to explore Danish adolescents and young adults' (AYAs) thoughts concerning sexual health particularly focusing on sexuality, intimacy, and body image throughout a cancer trajectory, (2) to investigate how AYAs experience healthcare professionals address of- and respond to sexual health issues, and (3) to identify AYAs' suggestions on how to support conversation about sexual health. METHODS: A qualitative, single-center study was conducted, including AYAs (18-29 years) diagnosed with cancer recruited at the University Hospital of Copenhagen, Rigshospitalet. Individual semi-structured interviews were conducted from January-February 2023, recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: Twelve participants were interviewed, aged 20-29; five were diagnosed with hematological- and seven with oncological cancer. Our analyses yielded three themes: (1) sexuality and body image as part of the identity, (2) excluding relatives in conversations about sexual health, and (3) uncertainty how to discuss sexual health with healthcare professionals. Finally, the AYAs' suggestions to support conversations about sexual health were organized into six thematic categories. CONCLUSION: In this study, participants experienced altered sexual subsequent impacts on body image and self-esteem during their cancer trajectory. While some adapted to these changes, discussing them with healthcare providers was difficult, especially in the presence of relatives, as the AYAs wanted to shield them from additional concerns. To enhance support, AYAs suggest regular discussions on sexual health and the use of a dialog tool by healthcare professionals.
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Imagen Corporal , Neoplasias , Humanos , Adulto Joven , Adolescente , Conducta Sexual , Sexualidad , Parejas SexualesRESUMEN
Introduction: Many studies using Patient-reported outcomes (PRO) data have been conducted to monitor symptoms and health-related quality of life during follow-up after cancer treatment. However new ways of using (e)PROs have emerged. We aimed to explore the Danish landscape of the use of PRO in a research setting, where PRO is used actively in cancer patients undergoing treatment, and give an overview of how it is embraced by patients and clinicians. Methods and materials: A literature search was performed in June 2023, using the keywords Denmark, cancer, and patient-reported outcomes. An expert on literature searches identified the search terms, and double screening was performed at both abstract and screening levels and full-text stage. The software tool Covidence was used. Results: 467 articles were retrieved and 19 studies were included. They described the type of ePRO instrument used and the application of active ePRO i.e. a dialogue tool in the clinical encounter, release of alerts to clinicians, and enhancement of self-management. Finally, a development in the use of active ePROs over time is elucidated and we show how it is embraced by patients and clinicians. Conclusion: This mini-review gives an overview of how ePRO solutions are tested in oncological research in Denmark and embraced by patients and clinicians. ePRO solutions in a Danish setting seem well-suited for self-management. However, if more impact is warranted, clinicians need to engage in reviewing and using ePROs. Moreover, for successful implementation, the integration of ePROs in electronic health records must be supported by IT specialists and management.
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BACKGROUND: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. OBJECTIVE: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. METHODS: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. RESULTS: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: "Role functioning" (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and "Pain" (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The "Global health/Overall QoL" scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: "Physical functioning" (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), "Cognitive functioning" (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and "Social functioning" (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the "Global health/Overall QoL" scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). CONCLUSIONS: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10098.
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PURPOSE: The objective of this systematic review was to establish an overview of aromatase inhibitor-related symptoms reported by postmenopausal women with nonmetastatic, estrogen receptor-positive breast cancer. DATA SOURCES: Eight databases (PubMed, Cochrane, Cumulative Index to Nursing and Allied Health Literature [CINAHL], Ovid EMBASE, Ovid MEDLINE, PsycINFO, Scopus, and Web of Science) were searched for trials published between January 2004 and November 2021. Inclusion criteria were studies exploring patient-reported aromatase inhibitor-related symptoms in postmenopausal women with nonmetastatic estrogen receptor-positive breast cancer. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Mixed Method Appraisal Tool were used to rate the quality of the trials included. Of 325 full-text papers, 10 were included. Patient-reported symptoms were clustered by using the European Organization for Research and Treatment of Cancer Quality of Life C30 questionnaire domains. Additional domains were used to cluster other symptoms mentioned: menopausal, sex-related, body alteration, and eye-related. The following clusters were the most frequently presented: sex-related (14 symptoms), pain (9 symptoms), insomnia (5 symptoms), and menopausal (5 symptoms). CONCLUSION: The target group reported a variety of symptoms related to aromatase inhibitors. No tools are currently available to measure all the symptoms reported, indicating a need to revise the tools to acknowledge additional symptoms. Prospective studies are needed to investigate the prevalence of aromatase inhibitor-related symptoms in women with breast cancer. IMPLICATION FOR NURSING PRACTICE: Identification of patient-reported clinically relevant symptoms can enable targeted symptom assessment and management strategies for women with breast cancer undergoing aromatase inhibitor treatment.
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Inhibidores de la Aromatasa , Neoplasias de la Mama , Femenino , Humanos , Inhibidores de la Aromatasa/efectos adversos , Receptores de Estrógenos , Posmenopausia , Calidad de Vida , Neoplasias de la Mama/tratamiento farmacológicoRESUMEN
OBJECTIVES: To investigate symptom patterns in young adults with cancer using a smartphone-based app. The authors sought to explore symptom frequency and severity, cluster patients based on their symptom severity, investigate the co-occurrence of severe symptoms, and explore the relationship between symptoms and activities. DATA SOURCES: Data were collected, using a mobile app, from 161 young adults with cancer (mean age 25.5 years, 75% female, 59% with solid cancer). Symptom frequency/severity was investigated with descriptive statistics. K-means clustering technique was used to cluster patients based on the average symptom severity. Co-occurrence of severe symptoms was investigated with the association rule technique. The relationship between symptom severity and likelihood of performing a physical/social activity was explored with mixed-effects logistic regression. CONCLUSION: The most frequently reported symptom was mood disturbance, followed by fatigue, which was also the most severe one. Two clusters of patients were identified, experiencing higher and lower severity for all symptoms. Severe appetite disturbances were frequently reported together with severe lack of energy and nausea. Severe lack of energy, either alone or together with mood disturbance, was often reported together with severe fatigue. Higher mood disturbance was associated with lower probability of performing physical and social activities. This study provides new insights into the symptom experience of young adults with cancer. IMPLICATIONS FOR NURSING PRACTICE: Using a symptoms-tracking app may be a valid strategy for healthcare professionals, nurses, and researchers to support patients in symptom monitoring and, consequently, to identify and implement tailored symptom-management strategies.
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Aplicaciones Móviles , Neoplasias , Humanos , Femenino , Adulto Joven , Adulto , Masculino , Neoplasias/diagnóstico , Náusea , Cuidados Paliativos/métodos , FatigaRESUMEN
PURPOSE: Nine hundred female adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer in Denmark annually. Advances in cancer therapy have led to increased long-term survival; however, a serious side effect of cancer therapy is reduced fertility. The aim of our study was to explore the thoughts about fertility among female AYAs with cancer. METHODS: Our study was conducted from September 2020 to March 2021 at the Copenhagen University Hospital, Rigshospitalet. Inclusion criteria were female AYAs with cancer aged 18-39. Twelve individual, semi-structured, qualitative interviews were performed with female AYAs with cancer (20-35 years). Data were analysed using thematic analysis. RESULTS: Four main themes were found: (1) the female AYAs held on to a hope of having children in the future; (2) the female AYAs experienced time pressure and waiting time as a sprint as well as a marathon; (3) the female AYAs faced existential and ethical choices about survival and family formation; and (4) the female AYAs felt a loss of control of their bodies. CONCLUSION: Our study contributes with knowledge on how important holding on to the hope of children in the future is among female AYAs with cancer. Meanwhile, they are frustrated by the rushed decision on fertility preservation at diagnosis. The female AYAs also have existential and ethical concerns related to the choice of cancer therapy and fertility preservation. Finally, they suffer from altered body image, loss of femininity, and body control due to hormone therapy.
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Preservación de la Fertilidad , Neoplasias , Niño , Humanos , Femenino , Adulto Joven , Adolescente , Masculino , Fertilidad , Investigación Cualitativa , Preservación de la Fertilidad/métodos , EmocionesRESUMEN
OBJECTIVES: Adolescents and young adults (AYAs) with cancer have identified connection to online communities of same-age peers to be essential for psycho-social support. In this study, the aim was to explore AYAs with cancers' and AYA cancer survivors' use of the Kræftværket cancer app's social forum and experiences of peer communities in the forum. Differences due to gender and treatment status were investigated. DATA SOURCES: In all, 85 AYAs aged 15-29 were recruited: 46 on and 39 off cancer treatment. The use of the social forum was assessed by a questionnaire, which were analyzed using descriptive statistics, and telephone interviews were analyzed thematically by the Framework Method. CONCLUSION: Some AYAs assessed the social forum to be more valuable at time of diagnosis, while others experienced meaningful peer-support after cancer. Women were more active and diligent users than men. The following themes were found: 1) Common understanding of each other's challenges; 2) Other AYAs' stories increase the feeling of comfort but can also be difficult to accommodate; 3) A temporary and unwanted community; and 4) The interaction is personal but quickly stalls. IMPLICATIONS FOR NURSING PRACTICE: The results are relevant to the development of AYA cancer apps, with a view to strengthening peer-to-peer relationships. Although the use of the Kræftværket app was temporary, it presented a meaningful community for AYAs with cancer. The community feeling reduced loneliness and increased the sense of togetherness. The app met AYAs' needs and wishes for peer-to-peer age-appropriate cancer support, which can be implemented and provided by nurses.
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Supervivientes de Cáncer , Aplicaciones Móviles , Neoplasias , Masculino , Humanos , Adolescente , Femenino , Adulto Joven , Neoplasias/terapia , Encuestas y Cuestionarios , Apoyo SocialRESUMEN
BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. METHODS: Twelve individual semi-structured interviews were performed with AYAs aged 20-35 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. RESULTS: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor's approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. CONCLUSION: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills.
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The majority of strokes occur in women who in crude numbers have poorer outcome including higher mortality from stroke than men. This may, however, to a large degree be explained by the preponderance of women in the older age groups. Nevertheless, incidence of stroke is higher in men than in women. Overall rates of stroke decline, but more in men than in women; consequently the excess number of strokes in women will be on the rise in the years to come. Risk factors differ between men and women: e.g. rates of atrial fibrillation and hypertension are higher in women with stroke, while rates of e.g. smoking or high alcohol consumption are higher in men, while some risk factors including diabetes or smoking carries a higher risk in women than in men. Especially older women are less well represented in many trials, which reduces the generalizability of results to this from a stroke perspective extremely important population, however, in areas of treatment where sufficient data is available, e.g. i.v. thrombolysis or mechanical thrombectomy the benefit is equal between sexes and may even be higher in women due to their longer life expectancy. Access to care varies between regions depending both on cultural factors and the overall access to care; in especially lower income countries though data is very scarce the impression is that women's access to care is restricted in comparison to men. Specific female risk factors including pregnancy or sex hormone therapy are rare causes of stroke especially in high-income countries, however these stroke events occur early in life and have massive effect of individual families. Evidence on stroke care in these events is extremely limited and more data, also including prospective generalizable observational data is urgently needed to guide clinicians. Further more specific data on women and stroke is needed to identify if gender in some instances should guide treatment and care.
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Accidente Cerebrovascular , Femenino , Humanos , Embarazo , Complicaciones Cardiovasculares del Embarazo/etiología , Complicaciones Cardiovasculares del Embarazo/terapia , Factores de Riesgo , Factores Sexuales , Accidente Cerebrovascular/epidemiología , Accidente Cerebrovascular/etiología , Accidente Cerebrovascular/terapiaRESUMEN
BACKGROUND: Incidental findings of suspect lung opacities are common in computed tomography (CT)-based thorax examinations, especially in high-risk patients, such as stroke patients. Screening with CT of the thorax has detected lung cancer in approximately .31%-1.20% of high-risk populations. The aim of the present study was to report the frequency of suspect lung opacities on routine acute stroke imaging. METHODS: Seven hundred and fifty-seven consecutive stroke patients evaluated for intravenous thrombolysis treatment within 4.5 hours of symptom debut, from June 2009 to December 2011, were included in a prospective registry on which this analysis was based. On admission, CT angiography from the aortic arch to vertex was performed, including the lung apices, corresponding to 1/3 of the total lung volume. A senior neuroradiologist reviewed all scans registering suspect lung opacities, which subsequently were characterized as either malignant, presumed malignant, presumed benign or benign, based on radiologic parameters of malignancy, positron emission tomography scan, histology, and clinical features. RESULTS: Suspect lung opacities appeared on the CT angiography in 20 patients (2.6%). Five suspect lung opacities were categorized as malignant and 3 suspect lung opacities were categorized as presumed malignant. This corresponds to an incidence of 1.1% (8 of 750). CONCLUSIONS: Malignant lung opacities were found in approximately 1% of this high-risk population, whereas our findings do not support full CT of the thorax as routine on stroke patients.
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Neoplasias Pulmonares , Accidente Cerebrovascular/complicaciones , Accidente Cerebrovascular/epidemiología , Tomografía Computarizada por Rayos X , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Incidencia , Neoplasias Pulmonares/diagnóstico por imagen , Neoplasias Pulmonares/epidemiología , Neoplasias Pulmonares/etiología , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Estadísticas no ParamétricasRESUMEN
BACKGROUND: Older patients are associated with increased stroke prevalence, worse outcome, and risk of undertreatment in comparison with younger patients. The aim of the present study was to compare risk factor distribution and functional outcome in stroke survivors older and younger than 80 years. METHODS: The analysis was based on consecutive patients admitted within 6 hours after stroke onset and discharged with ischemic stroke, surviving at least 3 months after ictus. To prevent bias, the analysis was based on a registry from before implementation of tissue plasminogen activator treatment; all patients received stroke unit care in accordance with the guidelines. The population was dichotomized into patients aged less than 80 years and 80 years of age or older. Modified Rankin Scale (mRS) score and Barthel Index (BI) were used to assess 3-month and 1-year outcome. RESULTS: Patients 80 years of age or older presented with significantly more severe strokes than younger patients, median Scandinavian Stroke Scale score 39 vs 42 (P = .003). Median mRS score before stroke was significantly higher in patients aged 80 years or older (P < .001) and remained high 3 months and 1 year after ictus (P < .001); the BI was equivalently lower (P < .001). The decline in function was comparable between groups. Patients 80 years of age or older of whom the majority were women (P < .001) presented with atrial fibrillation (P < .001), and hypertension (P = .005). CONCLUSIONS: Risk factors vary significantly with age, suggesting different stroke mechanisms. Patients older than 80 years experience more severe strokes and frequently have minor impairments before stroke. The increase in impairment after stroke is comparable with what is observed in younger patients, suggesting that good recovery after stroke may also be expected in older patients.