Disponible en http://www.insuficienciacardiaca.org Insuf Card 2014; (Vol 9) 4:153-163 Resumen Int... more Disponible en http://www.insuficienciacardiaca.org Insuf Card 2014; (Vol 9) 4:153-163 Resumen Introducción. La insuficiencia cardíaca congestiva (ICC) y la enfermedad renal crónica (ERC) son enfermedades frecuentes y crónicas, que se agravan mutuamente. Se ha propuesto la ultrafiltración por diálisis peritoneal (DP) como tratamiento de la ICC estadio D, sin respuesta a diuréticos, con ERC en etapa III-IV. Objetivos. Se desarrolló un programa de DP en pacientes con la situación clínica antes mencionada y se evaluó su impacto en la evolución de los mismos. Material y métodos. Se realizó un estudio prospectivo, abierto, intervencionista, sin grupo control. Se incluyeron 6 pacientes con ICC estadio D de cualquier etiología y tipo, y ERC etapa III-IV, sin causa de descompensación salvo la progresión, que no tuvieran adecuada respuesta a diuréticos y con limitación para el uso de inhibidores de la enzima de conversión de la angiotensina (IECA)/antagonistas de los receptores de la angioten...
Health-related quality of life (HRQOL) among patients on chronic hemodialysis (CHD), is associate... more Health-related quality of life (HRQOL) among patients on chronic hemodialysis (CHD), is associated with mortality, complications and compliance to treatment. To assess HRQOL in a group of patients on CHD. A cross-sectional multicenter study was carried out, involving 224 patients from five CHD units (3 private and 2 public) in Bio Bio Region, using the Kidney Disease Quality of Life -36 items (KDQOL-36) questionnaire and Karnofsky scale. Scores range from 0 to 100, with higher values representing a better HRQOL. Physical and Mental scales and subscales of symptoms, effect and the burden of kidney disease subscales rendered scores below 50 (the referential value), in 80%, 61%, 8%, 43% and 80% of evaluations, respectively. The lower scores were observed in patients with diabetes, coronary artery disease, hypoalbuminemia, serum creatinine below 9.4 mg/dL, age >or=55 years and in those with a low economic and educational level (p <0.05). HRQOL in patients on hemodialysis had value...
Artículo original 51 Galain A I, et al. Determinants of Quality Abstract There are limited studie... more Artículo original 51 Galain A I, et al. Determinants of Quality Abstract There are limited studies reporting on the Health Related Quality of Life (HRQL) of patients with end stage renal disease living in non-industrialized countries. This study describes the underlying relationships among determinants of HRQL in patients under renal replacement treatment. A cross-sectional design was used with a sample of 243 patients attending five hemodialysis and peritoneal dialysis centers of Montevideo (mean age 56.6 years, SD 16.2; 58% males). A univariate linear regression analysis was performed for each independent variable. A total of 61 independent variables were included: biological/ clinical, sociodemographic, and psychosocial. HRQL outcomes were evaluated using the SF-36 Health Survey eight subscales, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores. Variables shown to have significant association in the univariate analysis (p<0.10) were included in a multi...
Co mi té de Éti ca, Ca li dad de Vida y Cui da dos Pa lia ti vos. So cie dad Uru gua ya de Ne fro... more Co mi té de Éti ca, Ca li dad de Vida y Cui da dos Pa lia ti vos. So cie dad Uru gua ya de Ne fro lo gía. Uru guay Resumen Intro duc ción: las de ci sio nes re la cio na das con el fi nal de la vida son fre cuen tes en la prác ti ca ne fro ló gi ca. Aun que se pre sen tan en dife ren tes ám bi tos solo está cuan ti fi ca da la sus pen sión de diá li sis cró ni ca, que en Uru guay al can za al 7% de fa lle ci dos en diá li sis. Obje ti vo: co no cer las ac ti tu des y los cri te rios de los ne fró lo gos uru gua yos al en fren tar la toma de de ci sio nes res pec to a la suspen sión o no in clu sión de pa cien tes en diá li sis cró ni ca. Ma te rial y mé to do: en cues ta on li ne en tre ne fró lo gos uru gua yos, de res pues ta vo lun ta ria y anó ni ma. So bre tres si tua cio nes clí ni cas, pre gun ta mos: ¿Qué ha ría us ted?, y ¿A quié nes con sul ta ría en cada caso? Explo ra mos da tos de mo grá fi cos, ex pe rien cia pro fe sio nal, co no ci mien tos so bre le gis la ción y gra do de pre pa ra ción per ci bi da para en fren tar esas si tua cio nes. Re sul ta dos: res pon die ron 65 ne fró lo gos: 77% mu je res, 84% con más de diez años como es pe cia lis ta. Al plan tear "uno de sus pa cien tes en diá li sis ha evo lu cio na do has ta un es ta do de de men cia se ve ro y per ma nen te", 66% res pon dió "pro ba ble men te suspen do la diá li sis". Ante pa cien te com pe ten te que so li ci ta sus pen der el plan de diá li sis, 86% pro cu ra con ti nuar el tra ta mien to. Si "se so li ci ta co men zar diá li sis cró ni ca en un pa cien te en es ta do ve ge ta ti vo… irre ver si ble", 100% res pon de "pro ba ble men te no co mien zo diá li sis". Ante es tas si tua cio nes, to dos con sul ta rían al pa cien te/fa mi lia y a otros téc ni cos del equi po. Se con si de ra ron "pre pa ra dos" o "muy bien pre pa ra dos" para to mar es tas de ci sio nes 24 de 63. El co no ci mien to so bre la le gis la ción re sul tó es caso y no co no cen pro to co los que guíen la toma de es tas de ci sio nes. Con clu sio nes: los ne fró lo gos uru gua yos adop tan cri te rios bas tan te uni for mes ante pa cien tes en diá li sis en si tua ción gra ve e irre ver si ble, ac tuan do de acuer do con la fa mi lia y otros pro fe sio na les. Ne ce si ta mos pau tas con cri te rios mé di cos, éti cos y le gales para abor dar es tas si tua cio nes. Fi nan ció el cos to de Sur vey Mon key: So cie dad Uru gua ya de Ne fro lo gía. Con flic tos de in te rés: Los au to res de cla ran que no exis ten con flic tos de in te rés. Re ci bi do: 30/10/13 Acep ta do: 12/5/14
iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano e... more iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano estrutural, acarretando a deficiência física e no trabalho com altos custos socioeconômicos. 1, 2 Tem sido relatado que os pacientes com AR deixam de trabalhar 20 anos antes do que se espera na sua idade 1 e que apresentam grandes prejuízos na qualidade de vida. O uso de agentes biológicos para o tratamento dessa entidade é um desafio para a possibilidade de reduzir a carga causada pela doença.
BACKGROUND. Because health-related quality of life (QOL) is an important outcome in cancer manage... more BACKGROUND. Because health-related quality of life (QOL) is an important outcome in cancer management, the authors sought to better understand its determinants. To address this subject, they analyzed QOL, as measured with the Functional Assessment of Cancer Therapy-General questionnaire (FACT-G), Spanish Version 4, and depicted the complex relations among physical, psychological, social, and cultural factors, including spirituality. METHODS. A cross-sectional study design was used with a sample of 309 patients with cancer. The influence of several possible determinants was first studied by univariate regression analysis. Variables showing an association were included in a forward stepwise multivariate regression model. RESULTS. Five regression models were studied, for the FACT-G total score and its four subscales. Five variables explained 32.1% of the variance of the FACT-G total score: tumor stage, spiritual well-being, income, mood disorders, and mode of questionnaire administration. The type and relevance of the explanatory variables differed among the various dimensions of QOL. CONCLUSIONS. The authors underlined the entwining of biologic, psychosocial, and spiritual factors as determinants of the QOL of patients with cancer, thus supporting the multidimensional definition and modeling of the construct. Cancer 2005; 103:1072-81.
iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano e... more iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano estrutural, acarretando a deficiência física e no trabalho com altos custos socioeconômicos. 1, 2 Tem sido relatado que os pacientes com AR deixam de trabalhar 20 anos antes do que se espera na sua idade 1 e que apresentam grandes prejuízos na qualidade de vida. O uso de agentes biológicos para o tratamento dessa entidade é um desafio para a possibilidade de reduzir a carga causada pela doença.
The International Journal of Psychiatry in Medicine, 2014
This case describes a psychotherapy intervention in a patient in advanced stages of ALS. The inab... more This case describes a psychotherapy intervention in a patient in advanced stages of ALS. The inability for verbal communication at these stages necessitated the inclusion of a computational system to favor augmentative and alternative communication (AAC) to provide psychological care. The association of this device and software with ongoing psychotherapy acted in a synergistic manner. AAC devices made it possible to maintain patient-therapist communication and provided material support for psychotherapy despite severe speech limitations. This bimodal protocol of intervention resulted in better symptom control, improved communication with the team and family, reduction of psychological distress, promotion of autonomy, dignity, and self-esteem. The novelty of this communication is to report how the regular psychological care could be adapted to the patient circumstances using a computer device. Clinical trials will be required to evaluate the effectiveness of this mode of psychotherapy for the general population of ALS patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
Context. Several instruments have been developed to assess the symptom burden and fatigue produce... more Context. Several instruments have been developed to assess the symptom burden and fatigue produced by cancer and its treatment. However, little research has been conducted in Latin American Spanishespeaking patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
Objective: Given the potential and importance of personalized or individualized medicine for heal... more Objective: Given the potential and importance of personalized or individualized medicine for health care delivery and its effects on patients' quality of life, a plenary session was devoted to personalized medicine during the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL) held in October 2012 in Budapest, Hungary. This paper summarizes the three presentations and discusses their implications for quality-of-life research. Methods: Reviews of the literature and presentation of empirical studies. Results: Personalized screening for breast cancer. To individualize screening and only target those women with an increased risk for breast cancer, researchers at the Karolinska Institutet in Stockholm, perform a large population-based study to identify high risk women based on lifestyle, genetics, mammographic morphology and other markers as well as quality of life. Personalized support for treatment adherence. Inclusion of a simple, brief adherence measure into the clinical visit has demonstrated significant improvement in medication taking behaviour and resultant improvement in health status. Personalized diagnosis of mental disorders. The DSM-5, the current manual for mental disorders, contains patient-based symptom and diagnosis severity measures that allow more individualized diagnosis than was hitherto possible. Conclusions: Personalized medicine will continue to be increasingly applied and holds the potential to improve health outcomes including quality of life. At the same time, it will invite a host of new ethical, practical and psychosocial questions. Further reflection and discussion of how our field can embrace and address these emerging challenges is needed.
Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research
Objective: To identify currently available generic and disease-specific health-related quality of... more Objective: To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. Study Design: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust. Results: In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). Conclusions: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.
Journal of Continuing Education in The Health Professions, 2008
The production of online high-quality continuing professional development is a complex process th... more The production of online high-quality continuing professional development is a complex process that demands familiarity with effective program and content design. Collaboration and sharing across nations would appear to be a reasonable way to improve quality, increase access, and reduce costs.
Disponible en http://www.insuficienciacardiaca.org Insuf Card 2014; (Vol 9) 4:153-163 Resumen Int... more Disponible en http://www.insuficienciacardiaca.org Insuf Card 2014; (Vol 9) 4:153-163 Resumen Introducción. La insuficiencia cardíaca congestiva (ICC) y la enfermedad renal crónica (ERC) son enfermedades frecuentes y crónicas, que se agravan mutuamente. Se ha propuesto la ultrafiltración por diálisis peritoneal (DP) como tratamiento de la ICC estadio D, sin respuesta a diuréticos, con ERC en etapa III-IV. Objetivos. Se desarrolló un programa de DP en pacientes con la situación clínica antes mencionada y se evaluó su impacto en la evolución de los mismos. Material y métodos. Se realizó un estudio prospectivo, abierto, intervencionista, sin grupo control. Se incluyeron 6 pacientes con ICC estadio D de cualquier etiología y tipo, y ERC etapa III-IV, sin causa de descompensación salvo la progresión, que no tuvieran adecuada respuesta a diuréticos y con limitación para el uso de inhibidores de la enzima de conversión de la angiotensina (IECA)/antagonistas de los receptores de la angioten...
Health-related quality of life (HRQOL) among patients on chronic hemodialysis (CHD), is associate... more Health-related quality of life (HRQOL) among patients on chronic hemodialysis (CHD), is associated with mortality, complications and compliance to treatment. To assess HRQOL in a group of patients on CHD. A cross-sectional multicenter study was carried out, involving 224 patients from five CHD units (3 private and 2 public) in Bio Bio Region, using the Kidney Disease Quality of Life -36 items (KDQOL-36) questionnaire and Karnofsky scale. Scores range from 0 to 100, with higher values representing a better HRQOL. Physical and Mental scales and subscales of symptoms, effect and the burden of kidney disease subscales rendered scores below 50 (the referential value), in 80%, 61%, 8%, 43% and 80% of evaluations, respectively. The lower scores were observed in patients with diabetes, coronary artery disease, hypoalbuminemia, serum creatinine below 9.4 mg/dL, age >or=55 years and in those with a low economic and educational level (p <0.05). HRQOL in patients on hemodialysis had value...
Artículo original 51 Galain A I, et al. Determinants of Quality Abstract There are limited studie... more Artículo original 51 Galain A I, et al. Determinants of Quality Abstract There are limited studies reporting on the Health Related Quality of Life (HRQL) of patients with end stage renal disease living in non-industrialized countries. This study describes the underlying relationships among determinants of HRQL in patients under renal replacement treatment. A cross-sectional design was used with a sample of 243 patients attending five hemodialysis and peritoneal dialysis centers of Montevideo (mean age 56.6 years, SD 16.2; 58% males). A univariate linear regression analysis was performed for each independent variable. A total of 61 independent variables were included: biological/ clinical, sociodemographic, and psychosocial. HRQL outcomes were evaluated using the SF-36 Health Survey eight subscales, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores. Variables shown to have significant association in the univariate analysis (p<0.10) were included in a multi...
Co mi té de Éti ca, Ca li dad de Vida y Cui da dos Pa lia ti vos. So cie dad Uru gua ya de Ne fro... more Co mi té de Éti ca, Ca li dad de Vida y Cui da dos Pa lia ti vos. So cie dad Uru gua ya de Ne fro lo gía. Uru guay Resumen Intro duc ción: las de ci sio nes re la cio na das con el fi nal de la vida son fre cuen tes en la prác ti ca ne fro ló gi ca. Aun que se pre sen tan en dife ren tes ám bi tos solo está cuan ti fi ca da la sus pen sión de diá li sis cró ni ca, que en Uru guay al can za al 7% de fa lle ci dos en diá li sis. Obje ti vo: co no cer las ac ti tu des y los cri te rios de los ne fró lo gos uru gua yos al en fren tar la toma de de ci sio nes res pec to a la suspen sión o no in clu sión de pa cien tes en diá li sis cró ni ca. Ma te rial y mé to do: en cues ta on li ne en tre ne fró lo gos uru gua yos, de res pues ta vo lun ta ria y anó ni ma. So bre tres si tua cio nes clí ni cas, pre gun ta mos: ¿Qué ha ría us ted?, y ¿A quié nes con sul ta ría en cada caso? Explo ra mos da tos de mo grá fi cos, ex pe rien cia pro fe sio nal, co no ci mien tos so bre le gis la ción y gra do de pre pa ra ción per ci bi da para en fren tar esas si tua cio nes. Re sul ta dos: res pon die ron 65 ne fró lo gos: 77% mu je res, 84% con más de diez años como es pe cia lis ta. Al plan tear "uno de sus pa cien tes en diá li sis ha evo lu cio na do has ta un es ta do de de men cia se ve ro y per ma nen te", 66% res pon dió "pro ba ble men te suspen do la diá li sis". Ante pa cien te com pe ten te que so li ci ta sus pen der el plan de diá li sis, 86% pro cu ra con ti nuar el tra ta mien to. Si "se so li ci ta co men zar diá li sis cró ni ca en un pa cien te en es ta do ve ge ta ti vo… irre ver si ble", 100% res pon de "pro ba ble men te no co mien zo diá li sis". Ante es tas si tua cio nes, to dos con sul ta rían al pa cien te/fa mi lia y a otros téc ni cos del equi po. Se con si de ra ron "pre pa ra dos" o "muy bien pre pa ra dos" para to mar es tas de ci sio nes 24 de 63. El co no ci mien to so bre la le gis la ción re sul tó es caso y no co no cen pro to co los que guíen la toma de es tas de ci sio nes. Con clu sio nes: los ne fró lo gos uru gua yos adop tan cri te rios bas tan te uni for mes ante pa cien tes en diá li sis en si tua ción gra ve e irre ver si ble, ac tuan do de acuer do con la fa mi lia y otros pro fe sio na les. Ne ce si ta mos pau tas con cri te rios mé di cos, éti cos y le gales para abor dar es tas si tua cio nes. Fi nan ció el cos to de Sur vey Mon key: So cie dad Uru gua ya de Ne fro lo gía. Con flic tos de in te rés: Los au to res de cla ran que no exis ten con flic tos de in te rés. Re ci bi do: 30/10/13 Acep ta do: 12/5/14
iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano e... more iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano estrutural, acarretando a deficiência física e no trabalho com altos custos socioeconômicos. 1, 2 Tem sido relatado que os pacientes com AR deixam de trabalhar 20 anos antes do que se espera na sua idade 1 e que apresentam grandes prejuízos na qualidade de vida. O uso de agentes biológicos para o tratamento dessa entidade é um desafio para a possibilidade de reduzir a carga causada pela doença.
BACKGROUND. Because health-related quality of life (QOL) is an important outcome in cancer manage... more BACKGROUND. Because health-related quality of life (QOL) is an important outcome in cancer management, the authors sought to better understand its determinants. To address this subject, they analyzed QOL, as measured with the Functional Assessment of Cancer Therapy-General questionnaire (FACT-G), Spanish Version 4, and depicted the complex relations among physical, psychological, social, and cultural factors, including spirituality. METHODS. A cross-sectional study design was used with a sample of 309 patients with cancer. The influence of several possible determinants was first studied by univariate regression analysis. Variables showing an association were included in a forward stepwise multivariate regression model. RESULTS. Five regression models were studied, for the FACT-G total score and its four subscales. Five variables explained 32.1% of the variance of the FACT-G total score: tumor stage, spiritual well-being, income, mood disorders, and mode of questionnaire administration. The type and relevance of the explanatory variables differed among the various dimensions of QOL. CONCLUSIONS. The authors underlined the entwining of biologic, psychosocial, and spiritual factors as determinants of the QOL of patients with cancer, thus supporting the multidimensional definition and modeling of the construct. Cancer 2005; 103:1072-81.
iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano e... more iNTRoDUÇÃo A artrite reumatoide (AR) é uma doença complexa que gera inflamação articular e dano estrutural, acarretando a deficiência física e no trabalho com altos custos socioeconômicos. 1, 2 Tem sido relatado que os pacientes com AR deixam de trabalhar 20 anos antes do que se espera na sua idade 1 e que apresentam grandes prejuízos na qualidade de vida. O uso de agentes biológicos para o tratamento dessa entidade é um desafio para a possibilidade de reduzir a carga causada pela doença.
The International Journal of Psychiatry in Medicine, 2014
This case describes a psychotherapy intervention in a patient in advanced stages of ALS. The inab... more This case describes a psychotherapy intervention in a patient in advanced stages of ALS. The inability for verbal communication at these stages necessitated the inclusion of a computational system to favor augmentative and alternative communication (AAC) to provide psychological care. The association of this device and software with ongoing psychotherapy acted in a synergistic manner. AAC devices made it possible to maintain patient-therapist communication and provided material support for psychotherapy despite severe speech limitations. This bimodal protocol of intervention resulted in better symptom control, improved communication with the team and family, reduction of psychological distress, promotion of autonomy, dignity, and self-esteem. The novelty of this communication is to report how the regular psychological care could be adapted to the patient circumstances using a computer device. Clinical trials will be required to evaluate the effectiveness of this mode of psychotherapy for the general population of ALS patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
Context. Several instruments have been developed to assess the symptom burden and fatigue produce... more Context. Several instruments have been developed to assess the symptom burden and fatigue produced by cancer and its treatment. However, little research has been conducted in Latin American Spanishespeaking patients.
The FACT-G has gone through many validation studies. However, little research has been conducted ... more The FACT-G has gone through many validation studies. However, little research has been conducted in South American Spanish speaking patients. The present study aimed to evaluate the FACT-G Spanish Version 4 in Uruguayan cancer patients.
Objective: Given the potential and importance of personalized or individualized medicine for heal... more Objective: Given the potential and importance of personalized or individualized medicine for health care delivery and its effects on patients' quality of life, a plenary session was devoted to personalized medicine during the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL) held in October 2012 in Budapest, Hungary. This paper summarizes the three presentations and discusses their implications for quality-of-life research. Methods: Reviews of the literature and presentation of empirical studies. Results: Personalized screening for breast cancer. To individualize screening and only target those women with an increased risk for breast cancer, researchers at the Karolinska Institutet in Stockholm, perform a large population-based study to identify high risk women based on lifestyle, genetics, mammographic morphology and other markers as well as quality of life. Personalized support for treatment adherence. Inclusion of a simple, brief adherence measure into the clinical visit has demonstrated significant improvement in medication taking behaviour and resultant improvement in health status. Personalized diagnosis of mental disorders. The DSM-5, the current manual for mental disorders, contains patient-based symptom and diagnosis severity measures that allow more individualized diagnosis than was hitherto possible. Conclusions: Personalized medicine will continue to be increasingly applied and holds the potential to improve health outcomes including quality of life. At the same time, it will invite a host of new ethical, practical and psychosocial questions. Further reflection and discussion of how our field can embrace and address these emerging challenges is needed.
Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research
Objective: To identify currently available generic and disease-specific health-related quality of... more Objective: To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. Study Design: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust. Results: In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). Conclusions: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.
Journal of Continuing Education in The Health Professions, 2008
The production of online high-quality continuing professional development is a complex process th... more The production of online high-quality continuing professional development is a complex process that demands familiarity with effective program and content design. Collaboration and sharing across nations would appear to be a reasonable way to improve quality, increase access, and reduce costs.
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Papers by Juan Dapueto