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1.
JMIR Hum Factors ; 11: e54032, 2024 Jul 31.
Artículo en Inglés | MEDLINE | ID: mdl-39083790

RESUMEN

BACKGROUND: Dementia-related impairments can cause complex barriers to access, use, and adopt digital health technologies (DHTs). These barriers can contribute to digital health inequities. Therefore, literature-based design principles called DEMIGNED have been developed to support the design and evaluation of DHTs for this rapidly increasing population. OBJECTIVE: This study aims to apply the DEMIGNED principles in usability evaluation methods to (1) capture usability problems on a mobile website providing information resources for people visiting a memory clinic, including those living with subjective cognitive decline (SCD), mild cognitive impairment (MCI), or dementia, and (2) investigate the realness of usability problems captured by the DEMIGNED principles in expert testing, specifically for mobile websites that act as a means of providing DHTs. METHODS: First, a heuristic evaluation was conducted, with the DEMIGNED principles serving as domain-specific guidelines, with 3 double experts (experienced in both usability and dementia) and 2 usability engineering experts. Second, think-aloud sessions were conducted with patients visiting a memory clinic who were living with SCD, MCI, or dementia. RESULTS: The heuristic evaluation resulted in 36 unique usability problems. A representative sample of 7 people visiting a memory clinic participated in a think-aloud session, including 4 (57%) with SCD, 1 (14%) with MCI, and 2 (29%) with dementia. The analysis of the think-aloud sessions revealed 181 encounters with usability problems. Of these encounters, 144 (79.6%) could be mapped to 18 usability problems identified in the heuristic evaluation. The remaining 37 (20.4%) encounters from the user testing revealed another 10 unique usability problems. Usability problems frequently described in the think-aloud sessions encompassed difficulties with using the search function, discrepancies between the user's expectations and the content organization, the need for scrolling, information overload, and unclear system feedback. CONCLUSIONS: By applying the DEMIGNED principles in expert testing, evaluators were able to capture 79.6% (144/181) of all usability problem encounters in the user testing of a mobile website for people visiting a memory clinic, including people living with dementia. Regarding unique usability problems, 50% (18/36) of the unique usability problems identified during the heuristic evaluation were captured by the user-testing sessions. Future research should look into the applicability of the DEMIGNED principles to other digital health functionalities to increase the accessibility of digital health and decrease digital health inequity for this complex and rapidly increasing population.


Asunto(s)
Demencia , Humanos , Demencia/psicología , Femenino , Anciano , Masculino , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/psicología , Heurística , Interfaz Usuario-Computador , Persona de Mediana Edad
2.
Cancer Invest ; 40(5): 413-424, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35175864

RESUMEN

This multi-center cohort-study examined late mortality among 6,165 Dutch five-year childhood cancer survivors diagnosed 1963-2001. Clinical details and cause of death were based on medical records. Mortality was 12-fold that of the general population, with 51.3 additional deaths per 10,000 person-years (21.9 yrs median follow-up). Cumulative mortality 15 yrs post-diagnosis was 6.9%, predominantly from late recurrences; thereafter the absolute contribution of other health outcomes increased. Cumulative all-cause and recurrence-related mortality were highest for Central Nervous System and bone tumor survivors. All-cause, but not subsequent tumor and circulatory disease-related cumulative mortality, was highest for patients diagnosed 1963-1979 vs. later (p-trend <0.001).


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Neoplasias Óseas/mortalidad , Causas de Muerte , Niño , Estudios de Cohortes , Humanos , Neoplasias/diagnóstico , Neoplasias/epidemiología , Neoplasias/mortalidad , Neoplasias/terapia , Países Bajos/epidemiología
4.
Healthcare (Basel) ; 9(7)2021 06 22.
Artículo en Inglés | MEDLINE | ID: mdl-34206528

RESUMEN

Breast and prostate cancer patients may experience physical and psychological distress, and a possible decrease in sleep quality. Subjective and objective methods measure different aspects of sleep quality. Our study attempted to determine differences between objective and subjective measurements of sleep quality using bivariate and Pearson's correlation data analysis. Forty breast (n = 20) and prostate (n = 20) cancer patients were recruited in this observational study. Participants were given an actigraphy device (ACT) and asked to continuously wear it for seven consecutive days, for objective data collection. Following this period, they filled out the Pittsburgh Sleep Quality Index Questionnaire (PSQI) to collect subjective data on sleep quality. The correlation results showed that, for breast cancer patients, PSQI sleep duration was moderately correlated with ACT total sleeping time (TST) (r = -0.534, p < 0.05), and PSQI daytime dysfunction was related to ACT efficiency (r = 0.521, p < 0.05). For prostate cancer patients, PSQI sleep disturbances were related to ACT TST (r = 0.626, p < 0.05). Both objective and subjective measurements are important in validating and determining details of sleep quality, with combined results being more insightful, and can also help in personalized care to further improve quality of life among cancer patients.

5.
Midwifery ; 98: 102985, 2021 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-33761432

RESUMEN

OBJECTIVE: Smoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged, European women. This research aims to gain insight into the role of social networks on smoking cessation among disadvantaged young women during and after pregnancy. DESIGN: Qualitative interview study. SETTING: Dutch preventive care program (VoorZorg). PARTICIPANTS: Disadvantaged young women during and after pregnancy (n = 17) who participated in a Dutch preventive care program, and members in their social networks (n = 4). METHODS: All qualitative interviews were recorded, transcribed, and analyzed by iterative coding processes. FINDINGS: Many women were not intrinsically motivated to quit smoking due to, amongst other factors, difficulties in their lives (e.g. domestic violence, psychosocial problems), limited supportive social networks, and a strong dependence on relatives who smoked. Women seemed to be prompted to smoke by smoking cues in their social networks, while distancing from smokers would lead to feelings of social exclusion. When attempting to stop smoking, women experienced little encouragement from their social networks, which instead often undermined their smoking cessation efforts. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The social networks of disadvantaged young women mostly had a negative role on their smoking cessation efforts. Our results emphasize the need to look at interventions that involve women's social networks, and explore novel opportunities, such as eHealth and mHealth applications so that these women can build supportive new social networks.


Asunto(s)
Cese del Hábito de Fumar , Femenino , Humanos , Embarazo , Fumadores , Fumar , Red Social , Poblaciones Vulnerables
6.
Stud Health Technol Inform ; 264: 1795-1796, 2019 Aug 21.
Artículo en Inglés | MEDLINE | ID: mdl-31438348

RESUMEN

Skin cancer incidences have tripled in the Netherlands for the last twenty years and are expected to increase even more in the coming years. Teledermoscopy (TDsc) is implemented in Dutch practice to support and enhance early skin cancer detection by general practitioners (GPs) through remote consultation with dermatologists. This study assesses the effect of TDsc consultation on the quality and efficiency of skin cancer care in the primary setting by analyzing 10,184 TDsc consultations.


Asunto(s)
Dermatología , Médicos Generales , Neoplasias Cutáneas , Telemedicina , Humanos , Países Bajos , Derivación y Consulta , Neoplasias Cutáneas/terapia
7.
Health Soc Care Community ; 27(6): 1564-1573, 2019 11.
Artículo en Inglés | MEDLINE | ID: mdl-31446634

RESUMEN

In Europe, smoking during and after pregnancy is still highly prevalent among socioeconomically disadvantaged women. Nurses caring for these women can play a key role in smoking cessation, but encounter many problems when providing support. This research aims to identify barriers in providing smoking cessation support, experienced by nurses working within a Dutch preventive care programme for disadvantaged young women (VoorZorg), and to understand the underlying reasons of these barriers. Sixteen semi-structured interviews with nurses were performed. All interviews were recorded, transcribed and analysed deductively and inductively. We found that the VoorZorg programme provided nurses with training, resources and time to deliver smoking cessation support. Yet, nurses experienced important barriers, such as unmotivated clients and support methods that do not fit clients' needs. Underlying reasons are competing care demands, unsatisfactory training for cessation support, lack of self-efficacy in attending their clients, and conflicts with own professional attitudes. The results emphasise that nurses' ability to provide smoking cessation support could be improved by proper training in interventions that fit their clients' needs, and by time schedules and task definitions that help them to prioritise smoking cessation support over other matters.


Asunto(s)
Rol de la Enfermera/psicología , Cese del Hábito de Fumar/métodos , Prevención del Hábito de Fumar/métodos , Poblaciones Vulnerables/estadística & datos numéricos , Adulto , Europa (Continente) , Femenino , Humanos , Enfermeras y Enfermeros/psicología , Embarazo , Autoeficacia , Fumar/epidemiología , Adulto Joven
8.
Stud Health Technol Inform ; 264: 834-838, 2019 Aug 21.
Artículo en Inglés | MEDLINE | ID: mdl-31438041

RESUMEN

Early recognition of skin cancer is vital to enhance patient outcomes. Teledermoscopy (TDsc), a telemedicine service, supports general practitioners (GPs) in gaining fast access to dermatologists' feedback to detect skin cancer. This study aimed to assess if GPs gain expertise in diagnosing skin disorders after continued use of TDsc, based on diagnosis classification by the International Statistical Classification of Diseases and Related Health Problems (ICD-10). A retrospective study was conducted on TDsc consultations sent by GPs to teledermatologists in the Netherlands (July 2015 - June 2018). GP sensitivity and confirmed cases in diagnosing skin disorders slightly increased over time. However, the total positive predictive value showed a decrease. In three years, 43 melanomas were diagnosed by the TD for which the GP did not provide a (correct) pre-diagnose. Though GPs appear to improve their expertise in skin disorder detection after continued TDsc use, TDsc remains imperative to early melanoma detection.


Asunto(s)
Médicos Generales , Neoplasias Cutáneas , Detección Precoz del Cáncer , Humanos , Clasificación Internacional de Enfermedades , Países Bajos , Estudios Retrospectivos
9.
J Clin Oncol ; 35(20): 2288-2298, 2017 Jul 10.
Artículo en Inglés | MEDLINE | ID: mdl-28530852

RESUMEN

Purpose Childhood cancer survivors (CCSs) are at increased risk for subsequent malignant neoplasms (SMNs). We evaluated the long-term risk of SMNs in a well-characterized cohort of 5-year CCSs, with a particular focus on individual chemotherapeutic agents and solid cancer risk. Methods The Dutch Childhood Cancer Oncology Group-Long-Term Effects After Childhood Cancer cohort includes 6,165 5-year CCSs diagnosed between 1963 and 2001 in the Netherlands. SMNs were identified by linkages with the Netherlands Cancer Registry, the Dutch Pathology Registry, and medical chart review. We calculated standardized incidence ratios, excess absolute risks, and cumulative incidences. Multivariable Cox proportional hazard regression analyses were used to evaluate treatment-associated risks for breast cancer, sarcoma, and all solid cancers. Results After a median follow-up of 20.7 years (range, 5.0 to 49.8 years) since first diagnosis, 291 SMNs were ascertained in 261 CCSs (standardized incidence ratio, 5.2; 95% CI, 4.6 to 5.8; excess absolute risk, 20.3/10,000 person-years). Cumulative SMN incidence at 25 years after first diagnosis was 3.9% (95% CI, 3.4% to 4.6%) and did not change noticeably among CCSs treated in the 1990s compared with those treated earlier. We found dose-dependent doxorubicin-related increased risks of all solid cancers ( Ptrend < .001) and breast cancer ( Ptrend < .001). The doxorubicin-breast cancer dose response was stronger in survivors of Li-Fraumeni syndrome-associated childhood cancers (leukemia, CNS, and non-Ewing sarcoma) versus survivors of other cancers ( Pdifference = .008). In addition, cyclophosphamide was found to increase sarcoma risk in a dose-dependent manner ( Ptrend = .01). Conclusion The results strongly suggest that doxorubicin exposure in CCSs increases the risk of subsequent solid cancers and breast cancer, whereas cyclophosphamide exposure increases the risk of subsequent sarcomas. These results may inform future childhood cancer treatment protocols and SMN surveillance guidelines for CCSs.


Asunto(s)
Adultos Sobrevivientes de Eventos Adversos Infantiles/estadística & datos numéricos , Antineoplásicos/uso terapéutico , Neoplasias de la Mama/epidemiología , Neoplasias Primarias Secundarias/epidemiología , Sarcoma/epidemiología , Adolescente , Adulto , Anciano , Neoplasias Óseas/terapia , Neoplasias del Sistema Nervioso Central/terapia , Quimioradioterapia , Niño , Preescolar , Ciclofosfamida/uso terapéutico , Doxorrubicina/uso terapéutico , Femenino , Humanos , Ifosfamida/uso terapéutico , Incidencia , Lactante , Recién Nacido , Leucemia/terapia , Síndrome de Li-Fraumeni/terapia , Linfoma/terapia , Masculino , Persona de Mediana Edad , Países Bajos/epidemiología , Modelos de Riesgos Proporcionales , Sistema de Registros , Medición de Riesgo , Sarcoma/terapia , Neoplasias de los Tejidos Blandos/terapia , Factores de Tiempo , Adulto Joven
10.
Respir Med ; 108(2): 314-8, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24210893

RESUMEN

BACKGROUND: Interpreting spirometry results has proven challenging in primary care practice, among others potentially leading to under- and misdiagnosis of COPD. In telepulmonology a general practitioner (GP) digitally consults a pulmonologist to support the interpretation of spirometry results. This study assessed the effect of telepulmonology on quality and efficiency of care. METHODS: Quality of care was measured by five indicators, among others the percentage of TelePulmonology Consultations (TPCs) sent by GPs for advice, percentage of those TPCs resulting in a physical referral, and educational effect of telepulmonology as experienced by GPs. Efficiency was defined as the percentage of prevented unnecessary physical referrals of patients to the pulmonologist. RESULTS: Between April 2009 and November 2012 1.958 TPCs were sent by 158 GPs to 32 pulmonologists. Sixty-nine percent of the TPCs were sent for advice. Based on the advice of the pulmonologist 18% of these TPCs led to a physical referral of patients who would not have been referred without telepulmonology. Thirty-one percent of the TPCs were intended to prevent a physical referral, 68% of these actually prevented a physical referral to a pulmonologist. CONCLUSION: The results show telepulmonology can contribute to quality of care by supporting GPs and can additionally prevent unnecessary physical referrals.


Asunto(s)
Medicina General/métodos , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Neumología/métodos , Telemedicina/métodos , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Niño , Femenino , Medicina General/normas , Humanos , Masculino , Persona de Mediana Edad , Calidad de la Atención de Salud , Derivación y Consulta , Espirometría/métodos , Espirometría/normas , Resultado del Tratamiento , Procedimientos Innecesarios , Adulto Joven
11.
Cochrane Database Syst Rev ; (10): CD008944, 2013 Oct 08.
Artículo en Inglés | MEDLINE | ID: mdl-24101439

RESUMEN

BACKGROUND: Great improvements in diagnostics and treatment for malignant disease in childhood have led to a major increase in survival. However, childhood cancer survivors (CCS) are at great risk for developing adverse effects caused by multimodal treatment for their malignancy. Nephrotoxicity is one of these known (acute) side effects of several treatments, including cisplatin, carboplatin, ifosfamide, radiotherapy and nephrectomy, and can cause glomerular filtration rate impairment, proteinuria, tubulopathy and hypertension. However, evidence about the long-term effects of these treatments on renal function remains inconclusive. To reduce the number of (long-term) nephrotoxic events in CCS, it is important to know the risk of, and risk factors for, early and late renal adverse effects, so that ultimately treatment and screening protocols can be adjusted. OBJECTIVES: To evaluate existing evidence on the effects of potentially nephrotoxic treatment modalities on the prevalence of and associated risk factors for renal dysfunction in survivors treated for childhood cancer with a median or mean survival of at least one year after cessation of treatment, where possible in comparison with healthy controls or CCS treated without potentially nephrotoxic treatment. SEARCH METHODS: We searched the following electronic databases: the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library, Issue 4, 2011), MEDLINE/PubMed (from 1945 to December 2011) and EMBASE/Ovid (from 1980 to December 2011). SELECTION CRITERIA: With the exception of case reports, case series and studies including fewer than 20 participants, we included studies with all study designs that reported on renal function (one year or longer after cessation of treatment) in children and adults who were treated for a paediatric malignancy (aged 18 years or younger at diagnosis) with cisplatin, carboplatin, ifosfamide, radiation including the kidney region and/or a nephrectomy. DATA COLLECTION AND ANALYSIS: Two review authors independently performed study selection, risk of bias assessment and data extraction using standardised data collection forms. Analyses were performed according to the guidelines of the Cochrane Handbook for Systematic Reviews of Interventions. MAIN RESULTS: The search strategy identified 5504 studies, of which 5138 were excluded on the basis of title and/or abstract. The full-text screening of the remaining 366 articles resulted in the inclusion of 57 studies investigating the prevalence of and sometimes also risk factors for early and late renal adverse effects of treatment for childhood cancer. The 57 studies included at least 13,338 participants of interest for this study, of whom at least 6516 underwent renal function testing. The prevalence of renal adverse effects ranged from 0% to 84%. This variation may be due to diversity in included malignancies, prescribed treatments, reported outcome measurements and the methodological quality of available evidence.Chronic kidney disease/renal insufficiency (as defined by the authors of the original studies) was reported in 10 of 57 studies. The prevalence of chronic kidney disease ranged between 0.5% and 70.4% in the 10 studies and between 0.5% and 18.8% in the six studies that specifically investigated Wilms' tumour survivors treated with a unilateral nephrectomy.A decreased (estimated) glomerular filtration rate was present in 0% to 50% of all assessed survivors (32/57 studies). Total body irradiation; concomitant treatment with aminoglycosides, vancomycin, amphotericin B or cyclosporin A; older age at treatment and longer interval from therapy to follow-up were significant risk factors reported in multivariate analyses. Proteinuria was present in 0% to 84% of all survivors (17/57 studies). No study performed multivariate analysis to assess risk factors for proteinuria.Hypophosphataemia was assessed in seven studies. Reported prevalences ranged between 0% and 47.6%, but four of seven studies found a prevalence of 0%. No studies assessed risk factors for hypophosphataemia using multivariate analysis. The prevalence of impairment of tubular phosphate reabsorption was mostly higher (range 0% to 62.5%; 11/57 studies). Higher cumulative ifosfamide dose, concomitant cisplatin treatment, nephrectomy and longer follow-up duration were significant risk factors for impaired tubular phosphate reabsorption in multivariate analyses.Treatment with cisplatin and carboplatin was associated with a significantly lower serum magnesium level in multivariate analysis, and the prevalence of hypomagnesaemia ranged between 0% and 37.5% in the eight studies investigating serum magnesium.Hypertension was investigated in 24 of the 57 studies. Reported prevalences ranged from 0% to 18.2%. A higher body mass index was the only significant risk factor noted in more than one multivariate analysis. Other reported factors that significantly increased the risk of hypertension were use of total body irradiation, abdominal irradiation, acute kidney injury, unrelated or autologous stem cell donor type, growth hormone therapy and older age at screening. Previous infection with hepatitis C significantly decreased the risk of hypertension.Because of the profound heterogeneity of the studies, it was not possible to perform any meta-analysis. AUTHORS' CONCLUSIONS: The prevalence of renal adverse events after treatment with cisplatin, carboplatin, ifosfamide, radiation therapy involving the kidney region and/or nephrectomy ranged from 0% to 84%. With currently available evidence, it was not possible to draw any conclusions with regard to prevalence of and risk factors for renal adverse effects. Future studies should focus on adequate study design and reporting and should deploy multivariate risk factor analysis to correct for possible confounding. Until more evidence becomes available, CCS should be enrolled into long-term follow-up programmes to monitor their renal function and blood pressure.


Asunto(s)
Antineoplásicos/efectos adversos , Nefrectomía/efectos adversos , Radioterapia/efectos adversos , Insuficiencia Renal Crónica/etiología , Sobrevivientes , Adulto , Carboplatino/efectos adversos , Niño , Cisplatino/efectos adversos , Tasa de Filtración Glomerular/efectos de los fármacos , Tasa de Filtración Glomerular/fisiología , Tasa de Filtración Glomerular/efectos de la radiación , Humanos , Hipertensión/epidemiología , Hipertensión/etiología , Hipofosfatemia/epidemiología , Hipofosfatemia/etiología , Ifosfamida/efectos adversos , Deficiencia de Magnesio/epidemiología , Deficiencia de Magnesio/etiología , Proteinuria/epidemiología , Proteinuria/etiología , Insuficiencia Renal Crónica/epidemiología , Factores de Riesgo
12.
Artif Intell Med ; 59(1): 5-13, 2013 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-23684240

RESUMEN

OBJECTIVE: To assess whether a user-centred prototype clinical decision support system (CDSS) providing patient-specific advice better supports healthcare practitioners in terms of (a) types of usability problems detected and (b) effective and efficient retrieval of childhood cancer survivor's follow-up screening procedures compared to an expert-driven paper-based guideline. METHODS AND MATERIALS: A user-centred design (UCD) process was employed to design a prototype CDSS. Usability problems in information retrieval with the paper-based guideline were assessed by think-aloud analysis with 13 participants. Both simple and more complex tasks were applied. The analysis provided input for the UCD process of the prototype. The usability of the prototype CDSS was subsequently evaluated by think-aloud analysis with the same participants. Usability problems of the paper-based guideline and the prototype CDSS were compared by using the classification of usability problems scheme. In addition, efficiency (time to complete task) and effectiveness (completeness of retrieved screening procedures) of information retrieval of participants in the expert-driven paper-based guideline and the user-centred prototype CDSS were compared. RESULTS: Usability problems in both the paper-based guideline and the CDSS prototype were mainly classified as 'incongruent with participants' mental model'. The prototype CDSS reduced this type of problem from 17 to 6 problems. The time to perform simple information retrieval tasks increased by 58 s when using the prototype CDSS, however, it resulted in a 58% improvement in task completeness compared to the paper-based guideline. The time to perform complex scenarios decreased by 3:50 min with the prototype CDSS, with 17% higher completeness compared to the paper-based guideline. CONCLUSION: Analysis showed that usability problems experienced by healthcare practitioners when using a paper-based guideline could be overcome by implementing the guideline in a user-centred CDSS design. Although different types of usability problems were experienced with the prototype CDSS, they did not inhibit effective and efficient performance of tasks in the system. The usability problem analysis of the paper-based guideline effectively supported comparison of usability problems found in the two information retrieval systems and it supported the UCD of the CDSS.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas , Guías como Asunto , Evaluación de Resultado en la Atención de Salud
13.
J Biomed Inform ; 44(2): 372-83, 2011 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-21168526

RESUMEN

OBJECTIVE: RFID offers great opportunities to health care. Nevertheless, prior experiences also show that RFID systems have not been designed and tested in response to the particular needs of health care settings and might introduce new risks. The aim of this study is to present a framework that can be used to assess the performance of RFID systems particularly in health care settings. METHODS: We developed a framework describing a systematic approach that can be used for assessing the feasibility of using an RFID technology in a particular healthcare setting; more specific for testing the impact of environmental factors on the quality of RFID generated data and vice versa. This framework is based on our own experiences with an RFID pilot implementation in an academic hospital in The Netherlands and a literature review concerning RFID test methods and current insights of RFID implementations in healthcare. The implementation of an RFID system within the blood transfusion chain inside a hospital setting was used as a show case to explain the different phases of the framework. RESULTS: The framework consists of nine phases, including an implementation development plan, RFID and medical equipment interference tests, data accuracy- and data completeness tests to be run in laboratory, simulated field and real field settings. CONCLUSIONS: The potential risks that RFID technologies may bring to the healthcare setting should be thoroughly evaluated before they are introduced into a vital environment. The RFID performance assessment framework that we present can act as a reference model to start an RFID development, engineering, implementation and testing plan and more specific, to assess the potential risks of interference and to test the quality of the RFID generated data potentially influenced by physical objects in specific health care environments.


Asunto(s)
Atención a la Salud , Sistemas de Identificación de Pacientes/métodos , Dispositivo de Identificación por Radiofrecuencia/métodos , Hospitales , Países Bajos , Proyectos de Investigación/normas
14.
Pediatr Blood Cancer ; 54(1): 123-7, 2010 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-19743299

RESUMEN

BACKGROUND: Knowledge about past disease, treatment, and possible late effects has previously been shown to be low in survivors of childhood cancer and their relatives. This study investigated the information needs of childhood cancer survivors and their parents and explored possible determinants for differences in information need and health-related Internet use. PROCEDURE: Childhood cancer survivors or their parents were contacted to complete a questionnaire about their characteristics, Internet use and requirements/expectations of a website on late effects (N = 160). RESULTS: One-hundred forty-five questionnaires (90.6%) were returned. Of the 69 respondents (49.3%) who had visited a late effects outpatient clinic prior to the survey, 20 (29.0%) had questions left after the consult. The large majority of the population had home access to Internet and 71 respondents (49.3%) used Internet for medical questions. Only 15 respondents (10.5%) used Internet to look for information on late effects of childhood cancer and only 4 survivors found what they were looking for. Main information items requested were information about recognizing late effects, personalized information on late effects treatment and information on self-care. Only six respondents (4.2%) stated they would not visit a late effects website if it would be available. CONCLUSIONS: The need for late effects information showed to be of high priority by the majority of respondents, as was their interest in visiting a late effects website. In the development of a late effects website, attention should be given to patient information tailored to the personal situation of the website's users.


Asunto(s)
Información de Salud al Consumidor/métodos , Familia/psicología , Necesidades y Demandas de Servicios de Salud , Internet/estadística & datos numéricos , Neoplasias/psicología , Educación del Paciente como Asunto , Sobrevivientes/psicología , Adolescente , Actitud hacia los Computadores , Niño , Estudios de Cohortes , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Informática Médica , Autocuidado , Encuestas y Cuestionarios
15.
Stud Health Technol Inform ; 150: 342-6, 2009.
Artículo en Inglés | MEDLINE | ID: mdl-19745326

RESUMEN

Usability evaluation is an essential step in health care system development, including patient information websites. In this study we compared the think aloud method (TA) and the heuristic evaluation (HE) in a case study on the development of a website for childhood cancer survivors. Both methods managed to uncover all major problems with the website, though additionally HE found cosmetic issues and the TA found problems with website content. These findings contradict earlier studies but may be explained by the inclusion of two double experts in our study, presumably enabling them to take on the role of 'a patient' in testing the website. We nevertheless recommend the use of both methods if adequate funding and expertise are available; otherwise when HE usability evaluators are not familiar with the system domain, a work-domain expert could assist them in tackling domain-specific problems.


Asunto(s)
Internet/normas , Neoplasias , Educación del Paciente como Asunto/organización & administración , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud/métodos , Sobrevivientes , Adulto , Humanos , Países Bajos , Estudios de Casos Organizacionales
16.
JAMA ; 297(24): 2705-15, 2007 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-17595271

RESUMEN

CONTEXT: Improved survival of children with cancer has been accompanied by multiple treatment-related complications. However, most studies in survivors of childhood cancer focused on only 1 late effect. OBJECTIVE: To assess the total burden of adverse health outcomes (clinical or subclinical disorders ["adverse events"]) following childhood cancer in a large cohort of childhood cancer survivors with long-term and complete medical follow-up. DESIGN, SETTING, AND POPULATION: Retrospective cohort study of 1362 five-year survivors of childhood cancer treated in a single institution in the Netherlands between 1966 and 1996. All survivors were invited to a late-effects clinic for medical assessment of adverse events. Adverse events occurring before January 2004 were graded for severity in a standardized manner. MAIN OUTCOME MEASURES: Treatment-specific prevalence of adverse events (according to severity) at end of follow-up and relative risk of high or severe burden of disease (> or =2 severe or > or =1 life-threatening or disabling adverse events) associated with various treatments. RESULTS: Medical follow-up was complete for 94.3% of survivors (median follow-up, 17.0 years). The median attained age at end of follow-up was 24.4 years. Almost 75% of survivors had 1 or more adverse events, and 24.6% had 5 or more adverse events. Furthermore, 40% of survivors had at least 1 severe or life-threatening or disabling adverse event. A high or severe burden of adverse events was observed in 55% of survivors who received radiotherapy only and 15% of survivors treated with chemotherapy only, compared with 25% of survivors who had surgery only (adjusted relative risks, 2.18 [95% confidence interval, 1.62-2.95] and 0.65 [95% confidence interval, 0.46-0.90], respectively). A high or severe burden of adverse events was most often observed in survivors of bone tumors (64%) and least often in survivors of leukemia or Wilms tumor (12% each). CONCLUSIONS: In young adulthood, a substantial proportion of childhood cancer survivors already has a high or severe burden of disease, particularly after radiotherapy. This underscores the need for lifelong risk-stratified medical surveillance of childhood cancer survivors.


Asunto(s)
Costo de Enfermedad , Estado de Salud , Neoplasias/terapia , Sobrevivientes , Adulto , Niño , Femenino , Humanos , Masculino , Morbilidad , Estudios Retrospectivos
17.
Int J Med Inform ; 73(11-12): 781-95, 2004 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-15491929

RESUMEN

OBJECTIVES: Clinical use of computer systems has been hampered by their poorly designed user interfaces. The objective of this study was to design a user interface for a pediatric oncologists' computerized patient record with great consideration of their working behavior and of human computer interfacing principles so as to contribute to oncologists' efficiency and satisfaction in interaction with the system. METHODS: The think aloud method was used in combination with video recording to get a deep understanding of the way in which four pediatric oncologists searched through the paper-based patient record in preparing a patient visit. Protocol and video analyses was used to develop a cognitive task model reflecting pediatric oncologists' task behavior. This model was input for a prototype user interface, which was subsequently evaluated by eight other pediatric oncologists. RESULTS: The resulting computerized medical record system proved to meet pediatric oncologists' information needs and task behavior patterns. The design of the user interface minimized pediatric oncologists' work load and was highly efficient in supporting the pediatric oncologists in preparing their patient visits. The pediatric oncologists were very much satisfied with the computer system. CONCLUSIONS: It is argued that early involvement of cognitive engineering methods in the system design process may be of great help in designing systems that fully support health care professionals' work practices. The think aloud method, if applied under prescribed conditions, is a valuable information source of human task-behavior and as such a useful technique for requirements analysis in designing clinical computer systems.


Asunto(s)
Diseño de Equipo , Sistemas de Registros Médicos Computarizados , Interfaz Usuario-Computador , Instituciones de Atención Ambulatoria , Niño , Humanos , Oncología Médica , Neoplasias/terapia , Países Bajos , Pediatría , Pautas de la Práctica en Medicina
18.
J Clin Endocrinol Metab ; 88(8): 3657-63, 2003 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-12915651

RESUMEN

Late effects of treatment for childhood cancer on the thyroid axis are ascribed predominantly to radiotherapy. Whether chemotherapy has an additional detrimental effect is still unclear. Our aim was to evaluate this effect in young adult survivors of a broad spectrum of childhood cancers. The thyroid axis in 205 childhood cancer survivors was evaluated in relation to former use of chemotherapy and radiotherapy (cranial, cranio-spinal, cervical, mediastinal, or thoracic). The mean follow-up time was 17.5 yr. Damage to the thyroid axis was found in 55 patients (26.8%). Thirty-seven patients (18%) had thyroidal disease. Diagnoses varied from TSH elevation to papillary carcinoma. After multivariate analysis, high risk radiation field, irradiation dose, and the diagnosis of non-Hodgkin lymphoma/Hodgkin's disease were found to be significant risk factors for developing thyroid disease. Treatment with chemotherapy did not have an additional negative effect on the thyroid axis. For the development of central (pituitary or hypothalamic) thyroid dysfunction, patients with a brain tumor were at increased risk. Chemotherapy for childhood cancer does not contribute to the damage on the thyroid axis inflicted by radiotherapy during young adulthood.


Asunto(s)
Antineoplásicos/efectos adversos , Neoplasias/terapia , Radioterapia/efectos adversos , Glándula Tiroides/fisiología , Adolescente , Adulto , Niño , Preescolar , Relación Dosis-Respuesta a Droga , Relación Dosis-Respuesta en la Radiación , Femenino , Humanos , Hipotiroidismo/epidemiología , Hipotiroidismo/etiología , Lactante , Masculino , Análisis Multivariante , Neoplasias/tratamiento farmacológico , Neoplasias/radioterapia , Factores de Riesgo , Sobrevivientes , Enfermedades de la Tiroides/epidemiología , Enfermedades de la Tiroides/etiología , Pruebas de Función de la Tiroides , Glándula Tiroides/efectos de los fármacos , Glándula Tiroides/efectos de la radiación , Hormonas Tiroideas/sangre
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