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1.
Psychooncology ; 31(9): 1448-1458, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35734846

RESUMEN

OBJECTIVE: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long-term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well-being outcomes, is pivotal for optimising long-term well-being. METHODS: We completed a systematic review of longitudinal studies reporting outcomes after anti-cancer treatment for Adolescents and Young Adults diagnosed between the age of 12-29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). RESULTS: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self-report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. CONCLUSIONS: While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long-term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Adulto , Ansiedad/psicología , Supervivientes de Cáncer/psicología , Niño , Femenino , Humanos , Estudios Longitudinales , Masculino , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida/psicología , Encuestas y Cuestionarios , Adulto Joven
2.
BMC Infect Dis ; 22(1): 854, 2022 Nov 16.
Artículo en Inglés | MEDLINE | ID: mdl-36384484

RESUMEN

BACKGROUND: Rapid/point-of-care respiratory virus nucleic acid tests (NAT) may improve oseltamivir, antibiotic, diagnostic test, and hospital bed utilization. Previous randomized controlled trials (RCT) on this topic have not used standard procedures of an accredited healthcare and laboratory system. METHODS: We conducted a parallel RCT at two hospitals [paediatric = Alberta Children's Hospital (ACH); primarily adult = Peter Lougheed Centre (PLC)]. Patients with a respiratory viral testing order were randomized to testing at either a central accredited laboratory (standard arm) or with a rapid polymerase chain reaction test at an on-site accredited laboratory followed by standard testing [rapid on-site test (ROST) arm] based on day of specimen receipt at the laboratory. Patients and clinicians were blinded to assignment. The primary outcome for ACH was inpatient length of stay (LOS) and for PLC was the proportion of inpatients prescribed oseltamivir. RESULTS: 706 patient encounters were included at ACH; 322 assigned to ROST (181 inpatients) and 384 to the standard arm (194 inpatients). 422 patient encounters were included at PLC; 200 assigned to ROST (157 inpatients) and 222 to the standard arm (175 inpatients). The rate of oseltamivir prescription and number of doses given was reduced in PLC inpatients negative for influenza in the ROST arm compared to standard arm [mean 14.9% (95% CI 9.87-21.9) vs. 27.5% (21.0-35.2), p = 0.0135; mean 2.85 doses (SEM 2.39-3.32) vs. 4.17 doses (3.85-4.49) p = 0.022, respectively]. ROST also significantly reduced oseltamivir use at ACH, reduced chest radiographs (ACH), and laboratory test ordering (PLC), but not antibiotic prescriptions. ROST also reduced the median turnaround time by > 24 h (ACH and PLC). The LOS at ACH was not significantly different between the ROST and standard arms [median 4.05 days (SEM 1.79-18.2) vs 4.89 days (2.07-22.9), p = 0.062, respectively]. No adverse events were reported. CONCLUSIONS: In a RCT representing implementation of ROST in an accredited laboratory system, we found that a ROST improved oseltamivir utilization and is the first RCT to show reduced ancillary testing in both paediatric and adult populations. A larger study is required to assess reduction in paediatric LOS as ACH was underpowered. These findings help justify the implementation of rapid on-site respiratory virus testing for inpatients. Trial registration ISRCTN, number 10110119, Retrospectively Registered, 01/12/2021.


Asunto(s)
Gripe Humana , Virus Sincitial Respiratorio Humano , Infecciones del Sistema Respiratorio , Virus , Adulto , Niño , Humanos , Antibacterianos/uso terapéutico , Gripe Humana/diagnóstico , Gripe Humana/tratamiento farmacológico , Oseltamivir/uso terapéutico , Reacción en Cadena de la Polimerasa , Virus Sincitial Respiratorio Humano/genética , Infecciones del Sistema Respiratorio/diagnóstico , Infecciones del Sistema Respiratorio/tratamiento farmacológico
3.
J Clin Microbiol ; 59(11): e0097321, 2021 10 19.
Artículo en Inglés | MEDLINE | ID: mdl-34379529

RESUMEN

Staphylococcus pseudintermedius can easily be mistaken for Staphylococcus aureus using phenotypic and rapid biochemical methods. We began confirming the identification of all coagulase-positive staphylococci isolated from human wound cultures at our centralized laboratory, servicing both community and inpatients, with matrix-assisted laser desorption ionization-time of flight mass spectrometry instead of using phenotypic and rapid biochemical tests, and determined the prevalence of S. pseudintermedius since the change in identification procedure and at what cost. A retrospective review was performed on all wound swab cultures from which coagulase-positive staphylococci were isolated 7 months before and after the change in identification procedure. A total of 49 S. intermedius/pseudintermedius (SIP) isolates were identified, including 7 isolates from 14,401 wound cultures in the before period and 42 isolates from 14,147 wound cultures in the after period. The number of SIP isolates as a proportion of isolated coagulase-positive staphylococci increased significantly from the before, 7/6,351 (0.1%), to the after, 42/5,435 (0.7%), period (difference, 0.6% [95% confidence interval, 0.037 to 0.83%, P < 0.0001]). Antibiotic susceptibility testing was performed in 42 isolates; none had an oxacillin MIC of 1.0 to 2.0 µg/ml, the range in which, if the isolate was misidentified as S. aureus, a very major error in susceptibility interpretation would occur. The increase in cost of the change in identification procedure was Can$17,558 per year in our laboratory, performing microbiology testing for community and acute-care patients in a zone servicing nearly 1.7 million people. While we will only continue to learn more about this emerging pathogen if we make attempts to properly identify it in clinical cultures, the additional time and cost involved may be unacceptably high in some laboratories. .


Asunto(s)
Infecciones Estafilocócicas , Staphylococcus aureus , Humanos , Estudios Retrospectivos , Espectrometría de Masa por Láser de Matriz Asistida de Ionización Desorción , Infecciones Estafilocócicas/diagnóstico , Staphylococcus
4.
Psychooncology ; 30(11): 1849-1858, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34160847

RESUMEN

OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA-Needs Assessment (AYA-NA). METHODS: AYA patients (N = 288; 15-29 years, Mage  = 21.5 years, SDage  = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA-NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut-off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA-NA scores were reported. RESULTS: The DT correlated strongly with the HADS-Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut-off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty-two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA-NA item most likely to differentiate distressed AYAs. CONCLUSIONS: The DT is a valid distress screening instrument for AYAs with cancer. The AYA-POST (DT and AYA-NA) provides clinicians with a critical tool to assess the psychosocial well-being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns.


Asunto(s)
Neoplasias , Psicooncología , Adolescente , Adulto , Ansiedad/diagnóstico , Ansiedad/epidemiología , Preescolar , Humanos , Tamizaje Masivo , Neoplasias/psicología , Estrés Psicológico/psicología , Encuestas y Cuestionarios , Adulto Joven
5.
Psychooncology ; 27(3): 990-997, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29278663

RESUMEN

OBJECTIVE: To examine the relationship between the cancer care experiences of adolescents and young adults (AYAs) and their quality of life. METHODS: Two hundred and nine AYAs completed a cross-sectional, self-report survey distributed through the population-based cancer registries in 2 Australian states (New South Wales and Victoria). Eligible AYAs were 15 to 24 years old when diagnosed with any cancer (excluding early-stage melanoma) and were 3 to 24 months post-diagnosis. Questions examined whether particular care experiences occurred for the patient at different points in the cancer care pathway, including diagnosis, treatment, inpatient care, and at the end of treatment. Quality of life was assessed using the Functional Assessment of Cancer Therapy-General scale. RESULTS: Positive experiences of care at diagnosis, during treatment, during inpatient stays, and when finishing treatment were associated with higher functional, emotional, and social well-being. However, these associations generally became nonsignificant when communication and support experiences were included in the model. Inpatient experiences positively influenced emotional well-being over and above the effect of communication and support experiences. CONCLUSIONS: The results suggest that, for most AYAs' quality of life outcomes, positive experiences of age-appropriate communication and emotional support may underpin the effect of positive experiences of care throughout the cancer care pathway. The results support the need for communication and support tailored to an AYA audience, as recognised by recent Australian and international guidelines on the care of AYAs with cancer.


Asunto(s)
Neoplasias/psicología , Neoplasias/terapia , Satisfacción del Paciente , Calidad de Vida/psicología , Adolescente , Adulto , Australia , Estudios Transversales , Femenino , Humanos , Masculino , Adulto Joven
6.
J Psychosoc Oncol ; 36(4): 484-502, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29764330

RESUMEN

PURPOSE: This study investigated the impact of fertility-related discussions on Adolescent and Young Adult (AYA) cancer patients' quality of life (QoL) and the factors influencing provision of these discussions. METHODS: Recruitment was conducted through population-based state cancer registries. Eligible AYAs were 15-24 years at diagnosis, 3-24 months postdiagnosis, with any cancer (except early stage melanoma). As part of a larger survey, AYAs were asked about their experiences of fertility-related discussions and QoL (FACT-G). RESULTS: Of the 207 AYAs returning surveys (29% response rate) 88% reported a discussion about infertility risks, 75% reported a discussion about preservation options and 59% were offered a referral to a fertility specialist. Patients attending health services with an AYA focus were more likely than those attending other types of centers to report discussions of fertility preservation (FP) options (85% versus 67%) and referrals (75% versus 49%). Social well-being was positively related to discussions about preservation options and being provided fertility risk information in a sensitive, supportive manner. CONCLUSIONS: Providing a sensitive and proactive discussion about fertility-related risks may benefit AYAs' well-being. Services with an AYA focus are fulfilling their mandate of ensuring optimal fertility-related care for AYA cancer patients.


Asunto(s)
Consejo/estadística & datos numéricos , Preservación de la Fertilidad/estadística & datos numéricos , Neoplasias/terapia , Calidad de Vida , Adolescente , Australia , Estudios Transversales , Femenino , Preservación de la Fertilidad/psicología , Humanos , Masculino , Neoplasias/psicología , Factores de Riesgo , Adulto Joven
7.
J Paediatr Child Health ; 50(10): 775-81, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-24944088

RESUMEN

AIM: To examine and compare the presenting characteristics and the change in the physical and psychosocial functioning of adolescents with chronic fatigue syndrome (CFS) or somatoform disorders who have received an adaptable multidisciplinary intervention over a 12-month period. METHODS: Fifty adolescents presenting to the Complex Adolescent Clinic at The Children's Hospital at Westmead, Sydney, Australia were assessed. Their physical and psychosocial functioning was rated by the adolescents and their parents using the Child Health Questionnaire. Participants were assessed at baseline, 4 months and 12 months after initiating treatment. Analyses examined whether diagnosis and/or illness precipitants were related to treatment outcome. RESULTS: Adolescents with both CFS and somatoform disorders demonstrated improvement in physical and psychosocial functioning over the first 4 months of treatment, sustained at 12-month follow-up. A diagnosis of CFS was associated with poorer physical functioning over time and a trend towards a longer illness time course compared with somatoform disorder. Adjustment for a physical precipitant reduced the association between diagnosis and physical functioning. Those who had a physical precipitant to their illness had significantly poorer physical functioning over time than those who did not, regardless of diagnostic category. Diagnosis and physical precipitant were not associated with psychosocial functioning. CONCLUSIONS: Improvement in adolescent physical and psychosocial functioning over time suggests that a multidisciplinary treatment model may be effective for varied complex medico-psychosocial presentations, irrespective of diagnosis and illness precipitant. Illness precipitant may have a greater influence on treatment outcome than diagnostic category.


Asunto(s)
Conducta del Adolescente/psicología , Síndrome de Fatiga Crónica/terapia , Calidad de Vida , Trastornos Somatomorfos/terapia , Adaptación Psicológica , Adolescente , Conducta del Adolescente/fisiología , Instituciones de Atención Ambulatoria , Análisis de Varianza , Australia , Terapia Cognitivo-Conductual/métodos , Terapia Combinada , Síndrome de Fatiga Crónica/diagnóstico , Síndrome de Fatiga Crónica/psicología , Femenino , Estudios de Seguimiento , Hospitales Pediátricos , Humanos , Masculino , Análisis Multivariante , Terapia Ocupacional/métodos , Estudios Prospectivos , Psicología , Índice de Severidad de la Enfermedad , Trastornos Somatomorfos/diagnóstico , Trastornos Somatomorfos/psicología , Encuestas y Cuestionarios , Resultado del Tratamiento
8.
J Assoc Med Microbiol Infect Dis Can ; 8(2): 154-160, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38250286

RESUMEN

Background: We report a case of a 47-year-old male presenting with Yersinia enterocolitica septicemia with no known risk factors for invasive infection, found to have multiloculated liver and splenic abscesses with an antecedent history of mild enterocolitis. Case presentation: Our patient presented with septic shock in the setting of gastroenteritis with abdominal pain and fever. On work-up, he was found to have multiloculated hepatic and splenic abscesses secondary to Y. enterocolitica. No identifiable risk factors (ie, iron-overload syndrome or immunosuppression) for Y. enterocolitica septicemia were identified in our patient. Our patient was treated with a prolonged course of antibiotics until imaging resolution of his liver and splenic abscesses. Conclusion: Invasive Y. enterocolitica in an immunocompetent host is rare. Our case highlights the pathogenicity of Y. enterocolitica, and important treatment and management considerations.


Historique: Les auteurs rendent compte du cas d'un homme de 47 ans dont le tableau clinique révèle un sepsis à Yersinia enterocolitica sans facteurs de risque connus d'infection invasive, qui présentait des abcès hépatiques et spléniques multiloculés et des antécédents d'entérocolite bénigne. Présentation du cas: Le patient est arrivé en choc septique dans le contexte d'une gastroentérite, de douleurs abdominales et de fièvre. Le bilan a démontré la présence d'abcès hépatiques et spléniques multiloculés consécutifs à l'Y. enterocolitica. Aucun facteur de risque identifiable (syndrome de surcharge en fer ou immunosuppression) de sepsis à Y. enterocolitica n'a été observé. Le patient a reçu une antibiothérapie prolongée jusqu'à la résolution des abcès hépatiques et spléniques confirmée par imagerie. Conclusion: L'Y. enterocolitica invasive est rare chez un hôte immunocompétent. Ce cas fait ressortir la pathogénicité de l'Y. enterocolitica ainsi que des considérations importantes relativement au traitement et à la prise en charge.

9.
Health Soc Care Community ; 30(6): e4673-e4683, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35727048

RESUMEN

PEER is a four-day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self-compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated by improvements in processes targeted by psychotherapeutic elements of the program (psychological flexibility, mindfulness, self-compassion, peer support, distress). Adolescents attending PEER completed surveys assessing the quality of life and proposed mediator variables at pre-program, post-program and two-month follow-up. Adolescents experiencing high/very high levels of baseline distress (n = 52; 5 patients/survivors, 31 siblings/offspring, 13 bereaved siblings/offspring) were previously identified as experiencing clinically significant improvements in psychosocial well-being; here, mediation analyses explored whether these improvements were associated with improvements in process variables. Findings evidenced improvements in quality of life amongst distressed PEER participants, mediated by increases in psychological flexibility and self-compassion, and reductions in distress. Peer support and mindfulness were not significant mediators. Together, this suggests that the psychosocial benefits of PEER observed for highly distressed adolescents are linked to the specific therapeutic approaches used in the program, rather than being non-specific effects of peer connection or recreation. Findings from this evaluation provide further evidence for the efficacy and mechanisms of the effect of PEER for supporting distressed adolescents impacted by cancer. The study also demonstrates the viability and utility of the therapeutic approaches (acceptance and commitment therapy, self-compassion) used, showing that they have psychosocial benefits for this population.


Asunto(s)
Terapia de Aceptación y Compromiso , Atención Plena , Neoplasias , Humanos , Adolescente , Calidad de Vida/psicología , Australia , Neoplasias/terapia , Neoplasias/psicología , Empatía
10.
Psychiatry Res ; 312: 114529, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35398659

RESUMEN

Multimedia-based administration of questionnaires, presenting items both in writing and spoken word, offers numerous potential benefits in transcultural psychiatry, such as improved comprehension of each question, ease of administration, prevention of missing or arbitrary responses, and obviating subsequent data entry. The concept has become known as "Computer-Assisted Self Interviewing" (CASI), and while preliminary results are promising, previous studies have not directly compared CASI to paper-and-pen administration in a large and representative sample of refugees. The aim of this study was to evaluate the procedural validity of multilingual CASI in comparison to paper-based-administration. The Hopkins Symptom Checklist-25 anxiety and depression subscales were administered in both modalities with a total of N = 281 participants from sites in Australia, New Zealand, and Denmark. We evaluated potential deviations in both the raw item and scale scores in each modality, while psychometric properties of each subscale were compared for an Arabic-speaking subsample (n = 125). Results showed no significant differences between raw item- or scale score across the two modalities, nor between the level of construct validity. In conclusion, this study supports a wider adaptation of multilingual CASI in the context of transcultural psychiatry, both for purposes of screening and treatment evaluation.


Asunto(s)
Refugiados , Ansiedad , Computadores , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
11.
Front Psychol ; 13: 872830, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35602702

RESUMEN

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15-29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients.

12.
Cancers (Basel) ; 13(11)2021 May 28.
Artículo en Inglés | MEDLINE | ID: mdl-34071622

RESUMEN

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

13.
J Adolesc Young Adult Oncol ; 10(2): 202-208, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-32856982

RESUMEN

Purpose: While central nervous system (CNS) tumors account for only 10% of adolescent and young adult (AYA) cancers, they are the leading cause of cancer death in this age group. Using national data for Australia, we describe the presentation, treatment, and survival for AYAs diagnosed with CNS tumors. Methods: A population-based study of 15-24 year-olds diagnosed with CNS tumors (low- and high-grade glioma [LGG, HGG], medulloblastoma [MB], primitive neuroectodermal tumors [PNET], ependymoma [EP]) or other (e.g., low-grade neuronal tumor) between 2007 and 2012. Clinical details were extracted from hospital medical records for each patient. Treatment centers were classified as pediatric or adult services. Results: Two hundred seventy-five patients (129 LGG, 77 HGG, 23 MB, 10 PNET, 19 EP, 17 other) were identified, with 17% treated at pediatric hospitals. Symptoms (headache [53%], nausea [31%]) were present for a median of 3 weeks before consulting a health professional. Of LGG patients, 15% had radiotherapy (RT) and 12% chemotherapy (CT). Of HGG patients, 81% had RT and 75% CT. All MB and PNET were managed with surgery, and 74% of MB and 80% of PNET had both RT and CT. Treatment did not differ by treatment center type. Five-year survival for LGG and EP was over 80%, but was 42% for HGG and 20% for PNET. Conclusions: This national, population-based study indicates similar treatment for AYA patients with CNS tumors between pediatric and adult services. Poor outcomes for HGG and PNET patients highlight the need for clinical trials of novel approaches for these tumors.


Asunto(s)
Neoplasias del Sistema Nervioso Central , Adolescente , Australia/epidemiología , Neoplasias Encefálicas/terapia , Neoplasias del Sistema Nervioso Central/epidemiología , Neoplasias del Sistema Nervioso Central/terapia , Neoplasias Cerebelosas , Humanos , Tumores Neuroectodérmicos Primitivos/terapia , Resultado del Tratamiento , Adulto Joven
14.
J Adolesc Young Adult Oncol ; 8(3): 272-280, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30822262

RESUMEN

Background: While overall survival (OS) for cancer in adolescents and young adults (AYA) has improved, there has been little change in AYA survival for several types of sarcomas. Using national data for Australia we describe (1) the treatment centers caring for AYA sarcoma, (2) treatments provided, and (3) survival outcomes. Procedure: National population-based study assessing treatment of 15-24 year-olds diagnosed with soft tissue sarcoma (STS), bone sarcoma (BS), and Ewing family tumors (ET) between 2007 and 2012. Treatment details were abstracted from hospital medical records. Treatment centers were classified as pediatric or adult specialist AYA/sarcoma center, or other adult. Cox proportional hazard regression analyses examined associations between type of treatment center and OS. Results: Sixty-one hospitals delivered treatment to 318 patients (135 STS; 91 BS, 92 ET), with 9%, 22%, and 17% of STS, BS, and ET, respectively, treated at pediatric and 62%, 59%, and 71% at adult specialist hospitals. Of 18-24 year-olds, 82% of BS, 90% of ET, and 73% of rhabdomyosarcomas at adult specialist centers were on a trial or standard protocol, compared with 42%, 89%, and 100%, respectively, at nonspecialist adult hospitals. After adjusting for disease and patient characteristics, survival was not associated with treatment center type for any disease type. However, ET survival was poorer for patients not receiving a standard chemotherapy protocol. Conclusions: Around 10% of AYA sarcoma patients attending adult hospitals were not on a standard protocol. Poorer survival for ET patients not on a standard protocol highlights the importance of ensuring all patients receive optimal care.


Asunto(s)
Sarcoma/terapia , Adolescente , Adulto , Australia , Femenino , Humanos , Masculino , Adulto Joven
15.
Semin Oncol ; 45(5-6): 275-283, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30327126

RESUMEN

International data indicate that rates of clinical trial enrolment for Adolescents and Young Adults (AYAs) with cancer are markedly lower than for any other age group. This paper reviews the recent literature reporting international trends in clinical trial enrolment since 2010. Subsequently, we present the first population-based, national assessment of clinical trial enrolment for AYAs with cancer in Australia. Reported rates of trial enrolment from Australia, Canada, the United States, and the United Kingdom were variable, though consistently low, ranging between 2% and 29%. Trial enrolment was higher for younger AYAs (typically 15-19 years) and those attending pediatric hospitals, and this was replicated in the recent Australian data. The findings highlight a lack of substantial improvement in AYA clinical trial enrolment and in particular, a need for improved opportunities to access trials for patients treated at adult centers.


Asunto(s)
Ensayos Clínicos como Asunto , Neoplasias/epidemiología , Adolescente , Adulto , Factores de Edad , Edad de Inicio , Femenino , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/etiología , Neoplasias/terapia , Participación del Paciente , Adulto Joven
16.
J Adolesc Young Adult Oncol ; 7(3): 315-325, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29356588

RESUMEN

PURPOSE: To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country. METHODS: A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified. RESULTS: Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support. CONCLUSION: While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS.


Asunto(s)
Actitud Frente a la Salud , Supervivientes de Cáncer/psicología , Evaluación de Necesidades , Neoplasias/psicología , Cuidados Paliativos , Calidad de Vida , Adaptación Psicológica , Adolescente , Adulto , Australia , Estudios Transversales , Femenino , Estudios de Seguimiento , Humanos , Masculino , Satisfacción del Paciente , Pronóstico , Estudios Retrospectivos , Encuestas y Cuestionarios , Adulto Joven
17.
Hong Kong Med J ; 13(1): 16-21, 2007 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-17277387

RESUMEN

OBJECTIVE: To examine the relationships between body weight perceptions, estimated body mass index, gender, and weight control behaviours. DESIGN: Cross-sectional survey. SETTING: Three secondary schools in Hong Kong. PARTICIPANTS: A total of 1132 secondary school forms 1 and 3 students. MAIN OUTCOME MEASURES: The strength of agreement between perceived weight and estimated body mass index, and the association between perceived weight, estimated body mass index, and weight control behaviours. RESULTS: A total of 14% of students were estimated to be overweight or obese. The agreement between actual (estimated) body mass index and perceived weight was poor in females and fair in males (Kappa 0.137 and 0.225, respectively). In females, there was no evidence of a relationship between body mass index and weight control behaviours. However, there was a relationship between perceived weight and weight control behaviours such that females who perceived themselves as overweight were more likely to exercise, restrict caloric intake, self medicate with diet pills, purge, or use laxatives. In males, there was evidence of a relationship between perceived weight, body mass index, and weight control behaviours. Males who perceived themselves as overweight or were overweight, were more likely to exercise or restrict caloric intake. CONCLUSIONS: Body weight perceptions are not in agreement with actual weight in adolescents. This discrepancy is more marked in females who use a variety of weight control behaviours. These behaviours are motivated by perceived weight rather than actual (estimated) body mass index. Overweight adolescents should be encouraged to adopt appropriate weight control behaviours for their health needs.


Asunto(s)
Conducta del Adolescente , Imagen Corporal , Peso Corporal , Conductas Relacionadas con la Salud , Pérdida de Peso , Adolescente , Depresores del Apetito/administración & dosificación , Índice de Masa Corporal , Bulimia/epidemiología , Catárticos/administración & dosificación , Niño , Estudios Transversales , Dieta Reductora , Ingestión de Energía , Ejercicio Físico , Femenino , Hong Kong/epidemiología , Humanos , Masculino , Percepción , Factores Sexuales , Encuestas y Cuestionarios
18.
Int J Adolesc Med Health ; 19(3): 333-43, 2007.
Artículo en Inglés | MEDLINE | ID: mdl-17937150

RESUMEN

BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study was a preliminary evaluation of a transition program for young people with cystic fibrosis. Study group and methods: A self-administered questionnaire was completed by a group of 'pre-transition' adolescents and their parents who had not moved on to adult health care and a 'post-transition' group who had moved on from the Children's Hospital at Westmead over a six year period. The questionnaire examined patient and parent concerns about adult health care, participation in steps of the transition process, satisfaction with transition and health related quality of life. Measures of disease severity (lung function tests and body mass index) were also included. RESULTS: 137 out of 220 (62%) eligible participants completed the questionnaire. In the pre-transition group, parents had more concerns compared to young people. There was no evidence of a significant difference between pre-transition and post-transition young people regarding degree of concern. Most people were satisfied with the transition program and posttransition patients and parents who completed more steps in the transition program described the overall transition process more positively. There was no evidence of a relationship between amount of participation in transition and measures of disease severity or quality of life.


Asunto(s)
Servicios de Salud del Adolescente , Continuidad de la Atención al Paciente/organización & administración , Fibrosis Quística/terapia , Satisfacción del Paciente , Evaluación de Programas y Proyectos de Salud , Calidad de Vida , Adolescente , Adulto , Factores de Edad , Enfermedad Crónica , Estudios Transversales , Fibrosis Quística/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Desarrollo de Programa , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios , Factores de Tiempo
19.
J Adolesc Young Adult Oncol ; 6(1): 6-30, 2017 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-27454408

RESUMEN

PURPOSE: To assess what is currently known about unmet needs and care experiences of adolescents and young adults (AYAs) with cancer, identify gaps in the research literature, and highlight potential areas for improvement in future research. METHODS: Medline, PsycINFO, CINAHL, and EMBASE databases were searched to identify relevant studies from 1990 to July 2015. Eligible articles included self-reported care experiences or unmet needs of cancer patients aged between 15 and 30 years in the period between symptom onset and 2 years post-treatment. Qualitative and quantitative designs were included. RESULTS: Forty-five articles from 39 studies (23 qualitative, 12 quantitative, and 4 mixed methods) were rated as "adequate" or "good" quality and reviewed. The majority included any cancer diagnoses and none was longitudinal. There was considerable variation in age ranges and time since diagnosis between studies. Only two studies used standardized survey tools, with both tools validated on adult populations. The most common areas assessed for care experiences and needs were information/communication and fertility. In addition, care experience studies commonly examined clinical expertise and age-appropriate settings, while unmet needs studies reported on emotional support and peer interaction. CONCLUSION: Findings highlight the need for age-appropriate information and treatment facilities, access to emotional support services, and contact with peers. Fertility information and services are a priority issue for this group. Future research would benefit from a consistent definition of the AYA age range, increased used of standardized scales validated with this population, and longitudinal designs to assess changes over time.


Asunto(s)
Evaluación de Necesidades , Neoplasias/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven
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