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array:19 [ "pii" => "13125785" "issn" => "00257753" "doi" => "10.1016/S0025-7753(08)72258-9" "estado" => "S300" "fechaPublicacion" => "2008-09-13" "documento" => "article" "subdocumento" => "fla" "cita" => "Med Clin. 2008;131:281-4" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:2 [ "total" => 4058 "formatos" => array:3 [ "EPUB" => 10 "HTML" => 3757 "PDF" => 291 ] ] "itemSiguiente" => array:15 [ "pii" => "13125786" "issn" => "00257753" "doi" => "10.1016/S0025-7753(08)72259-0" "estado" => "S300" "fechaPublicacion" => "2008-09-13" "documento" => "article" "subdocumento" => "fla" "cita" => "Med Clin. 2008;131:285-9" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:2 [ "total" => 4175 "formatos" => array:3 [ "EPUB" => 13 "HTML" => 3861 "PDF" => 301 ] ] "es" => array:12 [ "idiomaDefecto" => true "titulo" => "Utilidad de la sonografía del parénquima cerebral en la enfermedad de Parkinson: Estudio comparativo con <span class="elsevierStyleSup">123</span>I-FP-CIT SPECT" "tienePdf" => "es" "tieneTextoCompleto" => "es" "tieneResumen" => array:2 [ 0 => "es" 1 => "en" ] "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "285" "paginaFinal" => "289" ] ] "titulosAlternativos" => array:1 [ "en" => array:1 [ "titulo" => "Usefulness of transcranial sonography in Parkinson's disease. A comparative study using <span class="elsevierStyleSup">123</span>I-FP-CIT SPECT" ] ] "contieneResumen" => array:2 [ "es" => true "en" => true ] "contieneTextoCompleto" => array:1 [ "es" => true ] "contienePdf" => array:1 [ "es" => true ] "resumenGrafico" => array:2 [ "original" => 0 "multimedia" => array:8 [ "identificador" => "fig1" "etiqueta" => "Fig. 1" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" "figura" => array:1 [ 0 => array:4 [ "imagen" => "2v131n08-13125786fig01.jpg" "Alto" => 732 "Ancho" => 2067 "Tamanyo" => 91070 ] ] "descripcion" => array:1 [ "es" => "A: imagen ultrasonográfica del mesencéfalo en un sujeto control, donde se visualiza como una estructura hipoecoica con morfología de mariposa, rodeado de las cisternas basales hiperecoicas. B: imagen correspondiente a un paciente con enfermedad de Parkinson. Nótese el aumento distintivo de la ecogenicidad en la sustancia negra (flechas)." ] ] ] "autores" => array:1 [ 0 => array:2 [ "autoresLista" => "Jorge Hernández Vara, Marta Rubiera del Fueyo, Carles Lorenzo Bosquet, Joan Castell Conesa, Carlos A Molina Cateriano, Francisco Miquel Rodríguez" "autores" => array:6 [ 0 => array:2 [ "nombre" => "Jorge" "apellidos" => "Hernández Vara" ] 1 => array:2 [ "nombre" => "Marta" "apellidos" => "Rubiera del Fueyo" ] 2 => array:2 [ "nombre" => "Carles" "apellidos" => "Lorenzo Bosquet" ] 3 => array:2 [ "nombre" => "Joan" "apellidos" => "Castell Conesa" ] 4 => array:2 [ "nombre" => "Carlos A" "apellidos" => "Molina Cateriano" ] 5 => array:2 [ "nombre" => "Francisco" "apellidos" => "Miquel Rodríguez" ] ] ] ] ] "idiomaDefecto" => "es" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/13125786?idApp=UINPBA00004N" "url" => "/00257753/0000013100000008/v0_201607111120/13125786/v0_201607111121/es/main.assets" ] "itemAnterior" => array:14 [ "pii" => "13125800" "issn" => "00257753" "estado" => "S300" "fechaPublicacion" => "2008-09-13" "documento" => "article" "subdocumento" => "fla" "cita" => "Med Clin. 2008;131:0" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:2 [ "total" => 26257 "formatos" => array:3 [ "EPUB" => 11 "HTML" => 22244 "PDF" => 4002 ] ] "es" => array:8 [ "idiomaDefecto" => true "titulo" => "Medicina clínica en breve" "tienePdf" => "es" "tieneTextoCompleto" => "es" "paginas" => array:1 [ 0 => array:1 [ "paginaInicial" => "0" ] ] "contieneTextoCompleto" => array:1 [ "es" => true ] "contienePdf" => array:1 [ "es" => true ] "resumenGrafico" => array:2 [ "original" => 0 "multimedia" => array:6 [ "identificador" => "fig1" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" "figura" => array:1 [ 0 => array:4 [ "imagen" => "2v131n08-13125800fig01.jpg" "Alto" => 596 "Ancho" => 1352 "Tamanyo" => 161363 ] ] ] ] ] "idiomaDefecto" => "es" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/13125800?idApp=UINPBA00004N" "url" => "/00257753/0000013100000008/v0_201607111120/13125800/v0_201607111121/es/main.assets" ] "en" => array:14 [ "idiomaDefecto" => true "titulo" => "Calidad de vida relacionada con la salud: acuerdo entre el cuidador principal y el paciente con sporte nutricional domiciliario" "tieneTextoCompleto" => true "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "281" "paginaFinal" => "284" ] ] "autores" => array:1 [ 0 => array:3 [ "autoresLista" => "Carmina Wanden-Berghe, Andreu Nolasco, Mercè Planas, Javier Sanz-Valero, Teresa Rodríguez, Grupo NADYA-SENPE, Cristina Cuerda" "autores" => array:7 [ 0 => array:3 [ "nombre" => "Carmina" "apellidos" => "Wanden-Berghe" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "affa" ] ] ] 1 => array:3 [ "nombre" => "Andreu" "apellidos" => "Nolasco" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "affb" ] ] ] 2 => array:3 [ "nombre" => "Mercè" "apellidos" => "Planas" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "affc" ] ] ] 3 => array:3 [ "nombre" => "Javier" "apellidos" => "Sanz-Valero" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "affd" ] ] ] 4 => array:3 [ "nombre" => "Teresa" "apellidos" => "Rodríguez" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "affc" ] ] ] 5 => array:2 [ "nombre" => "Grupo" "apellidos" => "NADYA-SENPE" ] 6 => array:3 [ "nombre" => "Cristina" "apellidos" => "Cuerda" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "affc" ] ] ] ] "afiliaciones" => array:4 [ 0 => array:3 [ "entidad" => "Sociedad Española de Nutrición Parenteral y Enteral (SENPE). Madrid. Universidad Cardenal Herrera CEU. Elche. Alicante." "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "affa" ] 1 => array:3 [ "entidad" => "Departamento de Enfermería Comunitaria, Medicina preventiva y Salud Pública e Historia de la Ciencia. Universidad de Alicante. Alicante." "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "affb" ] 2 => array:3 [ "entidad" => "Sociedad Española de Nutrición Parenteral y Enteral (SENPE). Madrid." "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "affc" ] 3 => array:3 [ "entidad" => "Sociedad Española de Nutrición Parenteral y Enteral (SENPE). Madrid. Departamento de Enfermería Comunitaria, Medicina preventiva y Salud Pública e Historia de la Ciencia. Universidad de Alicante. Alicante. Departamento de Salud Pública, Historia de la Ciencia y Ginecología. Universidad Miguel He" "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "affd" ] ] ] ] "titulosAlternativos" => array:1 [ "en" => array:1 [ "titulo" => "Health-related quality of life according to the main caregiver in patients with home nutritional support" ] ] "textoCompleto" => "<br></br><br></br><p class="elsevierStylePara">Socio-demographical changes and scientific advances have sensitively increased the longevity and changed the course of many rapidly mortal illnesses, which now end up as chronic conditions. Besides a different healthcare scenario, these patients live longer yet at the expense of a deteriorated health-related quality of life (HRQL). In consonance with this, and since some decades, the World Health Organization defines health when to the absence of sickness is added the necessity of a complete physical, mental and social well-being status<span class="elsevierStyleSup">1</span>, close to the actual definitions of HRQL. These definitions offer a wide concept of HRQL, in particular as the global perception of satisfaction in a specific number of code dimensions<span class="elsevierStyleSup">2</span>. In 1994 the group WHOQOL (World Health Organization Quality of Life) defined it as: «An individual's perception of his/her position in the culture and system of values where he/she lives, in relation to his/her objectives, expectations, values and worries»<span class="elsevierStyleSup">3</span>.</p><p class="elsevierStylePara">The HRQL joins 3 concepts: health, health status and quality of life, grouping factors which are a part of the individual with those external to him<span class="elsevierStyleSup">4</span>. The health status is evaluated with objective traditional measurements, but the factors related to quality of life are generally excluded<span class="elsevierStyleSup">5</span>. The latter, much more complex, cannot be measured directly, but it can be measured in an indirect way with indicators made up from questionnaires that evaluate the different dimensions that influence on it. The questionnaires that evaluate the perceived individual health in a standardized and multidimensional way emerged in the 70s. These instruments include generic dimensions as the physical, mental and social state of the individual. However, since they do not include specific aspects for the evaluation of a specific pathology, they could have a low sensitivity to changes. Some of the most commonly used are the Sickness Impact Profile<span class="elsevierStyleSup">6,7</span>, the Nottingham Health Profile<span class="elsevierStyleSup">8,9</span>, the 36-Item Short Form Health Survey (SF-36)<span class="elsevierStyleSup">10</span>, the EuroQol-5D<span class="elsevierStyleSup">11</span> and the illustrating COOP/WONCA<span class="elsevierStyleSup">12</span>.</p><p class="elsevierStylePara">In the 90s, specific instruments started to develop to quantify the effect on quality of life of a specific pathology or a defined population group. An instrument that has the advantages of being simple and fast in application, remade-up and validated in many European countries, is the EuroQol-5D<span class="elsevierStyleSup">13</span>, a generic questionnaire which evaluates 5 dimensions that any pathology can modify affecting the quality of life.</p><p class="elsevierStylePara">The home nutritional support (HNS) is used based on some arguments as the increase of quality of life that would let the patient and family receive their treatment at home<span class="elsevierStyleSup">14</span>. Moreover, the statement «the HNS increases the patient's quality of life» is frequently found in scientific literature, even though it is not normally supported by any type of study<span class="elsevierStyleSup">15</span>. In fact, from bibliographic reviews, small series that use several measurement instruments have raised conclusions that are probably conditioned by the scarce sensitivity to change of these instruments<span class="elsevierStyleSup">16</span>.</p><p class="elsevierStylePara">Among patients receiving HNS, those who use an enteric route are mostly patients with oncological and neurological affections<span class="elsevierStyleSup">17</span>. On the other hand, patients who receive parenteral nutrition have usually sicknesses related to intestinal insufficiency (short intestine syndrome, radiotherapy-induced enteritis, intestinal inflammatory sickness, among others) and cancer<span class="elsevierStyleSup">18</span>. An important proportion of HNS patients present serious communication problems during their evolution, which enables the register of whatever type of information directly from the patient (e.g., cerebro-vascular accident, Alzheimer's disease, multiple sclerosis, Parkinson's disease, lateral amniotophic sclerosis, head and neck tumors). The information must be obtained from the main caregiver, but we do not have enough information about the concordance between the HRQL of the caregiver and that of the patient or of the predictive capacity of the HRQL punctuation of the caregiver to obtain that of the patient. Should this degree of concordance and the predictive capacity be enough, we would be able to evaluate the HRQL of the patients with the caregiver's answers.</p><p class="elsevierStylePara">In this study, we intended to know the degree of agreement between the quality of life's perception of patients with HNS and that of their main caregiver in the different dimensions (mobility, self-care, ability to carry out daily activities, pain and anxiety/depression), in order to establish the predictive capacity of the HRQL punctuation of the caregiver about the patient, fixed by other variables.</p><p class="elsevierStylePara"><span class="elsevierStyleBold">Method</span></p><p class="elsevierStylePara">The study included 245 pairs of subjects (patients with HNS and their main caregiver). The patients came from 13 hospitals included in the Spanish National Health System, distributed in 13 Spanish cities, and they were included consecutively in the study as they entered the hospital or when the patient was attended at home. All patients were receiving enteral HNS in the moment of the study. This study followed all the requirements of the clinical investigation and Ethics Committee of the hospital that coordinated the study, and with the Helsinki Declaration of 1964 (amended in 1975 and 1983), the one of the World Medical Association. Also, we obtained the patients and main caregiver's informed consent to participate in the study.</p><p class="elsevierStylePara">The studied variables were: age, sex, level of studies, relation with the main caregiver and pathologic group. The same variables were obtained from the main caregiver, except for the pathological group.</p><p class="elsevierStylePara">To evaluate the HRQL, the questionnaire EuroQoL of 5 dimensions (EQ-5D) was used and completed with an interview done by an interviewer trained to limit whatever problem of influence in the answers of the subjects. They were administered to the patients and the caregiver the same day and at the same time in different rooms to avoid answer contamination.</p><p class="elsevierStylePara">The questionnaire EQ-5D used<span class="elsevierStyleSup">19</span> ­questionnaire + visual analogical scale (VAS)­ permits a descriptive analysis of the 5 dimensions explored (mobility, self-care, ability to carry out daily activities, pain and anxiety/depression) valuating each of them at 3 levels (1: absence of problem; 2: moderate problem; 3: severe problem). The EQ-5D also includes an item that evaluates the change perceived in HRQL for the last 12 months (annex 1). The VAS is a milimetred scale of 20 cm long that quantifies the HRQL perceived, from 0, as the worst imaginable HRQL, to 100, as the best HRQL. This provides an evaluation possibility that complements the description of the health status that the subject perceives as related to the quality of life.</p><p class="elsevierStylePara"><img src="2v131n08-13125785tab01.gif"></img></p><p class="elsevierStylePara">ANNEX 1 Questionnaire EQ-5D used in the study: questionnaire + visual analogical scale </p><p class="elsevierStylePara"><span class="elsevierStyleBold">Statistical analysis</span></p><p class="elsevierStylePara">The statistical data analysis was done with descriptive techniques, McNemar test and kappa coefficient for the qualitative variable concordance. The concordance between the punctuations of the EQ-5D and VAS was estimated by the intraclass correlation coefficient (ICC)<span class="elsevierStyleSup">20</span>. To study the predictive capacity of the caregivers punctuation over the one of the patient, regression line models fixed up by the rest of variables were constructed, in the same way as to study the relation between the EQ-5D and VAS punctuations of the patient and that of their correspondent main caregiver. The patient and main caregiver's VAS punctuations were transformed in dichotomised variables (0 if punctuation # 40, considering it as bad HRQL, and 1 if > 40, considering a regular-good valuation of the HRQL). The pertinence to each one of these 2 categories between the patient's punctuation, and that of the main caregiver, was studied by logistic regression models, fixing up the rest of variables.</p><p class="elsevierStylePara"><span class="elsevierStyleBold">Results</span></p><p class="elsevierStylePara">54.4% of the studied patients were men and 45.6% women, with a mean age (standard deviation) of 62.7 (17.0) years. The main caregivers were women (78.5%), with a mean age of 53.1 (13.5) years. The chief caregiver in the 49.6% of cases was the patient's partner. In both, patient and main caregiver, a primary level of studies predominated (52.1%, and 47.2% respectively), finding no sex differences in any case (p = 0.330; p = 0.418). The mean ages in both groups, patients and main caregiver, were significantly lower in the group with university studies and secondary than in those with primary studies or illiterate (p < 0.001) (table 1).</p><p class="elsevierStylePara"><img src="2v131n08-13125785tab02.gif"></img></p><p class="elsevierStylePara">The pathologic groups were as follows: oncological (44.0%), neurological (36.6%) and other pathologies (19.3%), without differences in sex between these groups (p = 0.658). Neurological patients were older (p < 0.001) than any of the other 2 groups.</p><p class="elsevierStylePara">With regard to the evaluation of the perceived health state in the last 12 months, we observed a concordance between patients and main caregivers of 68.7% (McNemar's test, p = 0.705; kappa = 0,504, p < 0.001).</p><p class="elsevierStylePara">Analyzing the dimensions of the EQ-5D, regarding in the patient's mobility dimension, the concordance was 88.6% (McNemar's test, p = 0.274; kappa = 0.828, p < 0.001). Regarding the self-care of the patient, the concordance was 84.2% (McNemar's test, p = 0.261; kappa = 0.761, p < 0.001). In the ability to carry out daily activities, the concordance was 81.6% (McNemar's test, p = 0.028; kappa = 0.716, p < 0.001). In relation to the patient's pain we observed a concordance of 75.2% (McNemar's test, p = 0.013; kappa = 0.520, p < 0.001). Anxiety and depression presented a concordance of 58% (McNemar's test, p = 0.005; kappa = 0.340, p < 0.001).</p><p class="elsevierStylePara">When studying the concordance between the global punctuations of the caregiver and the patient in the EQ-5D an ICC = 0.887 (95% confidence interval [CI], 0.852-0.913) was obtained.</p><p class="elsevierStylePara">When studying the lineal relation between the patient and main caregiver's punctuation, the EQ-5D had an R<span class="elsevierStyleSup">2</span> of 0.649, with a regression coefficient of 0.803 (95% CI, 0.725-0.882). When fixing the lineal regression model for the rest of variables, the following results were obtained: punctuation EQ-caregiver (p < 0.001; 95% CI, 0.679-0.851), main caregiver's sex (p = 0.042) and pathological group (p = 0.033). The amplified determination coefficient of the model was of R<span class="elsevierStyleSup">2</span> = 0.666, with a greater punctuation of the patient when the main caregiver had a greater punctuation, when the main caregiver was a woman and it was the pathological group of «other pathologies» against oncological or neurological.</p><p class="elsevierStylePara">When studying the concordance between the caregiver and the patient with respect to the VAS punctuation, an ICC = 0.823 (95% CI, 0.771-0.863) was obtained.</p><p class="elsevierStylePara">The lineal relation analysis between the patient's punctuation and that of the main caregiver, in the VAS, had an R<span class="elsevierStyleSup">2</span> = 0.475, with regression coefficient = 0.719 (95% CI, 0.617-0.822). Fixing the model to the rest of variables, the following were seen: VAS punctuation of the main caregiver (p < 0.001; 95% CI, 0.597-0.806), sex of the patient (p = 0.036), patient's health (p = 0.02), main caregiver's age (p = 0.011). The determination coefficient of the amplified model was 0.515, resulting in a greater punctuation of the patient when the main caregiver's punctuation was greater, when the patient was a man, when the main caregiver was older and when the health state evaluation of the patient was «better than in the last 12 months».</p><p class="elsevierStylePara">To evaluate the predictive ability of the main caregiver's punctuation about that of the patients, recording the corresponding punctuations (> 40 or # 40), a regression logistic model was constructed, obtaining a significative effect in the following variables: main caregiver's punctuation (p < 0.001), main caregiver's age (p = 0.046) and health status in the last 12 months (p = 0.016). We observed a greater probability that the patients punctuation was below 40 when the main caregiver's was also below 40, when the main caregiver was younger and when the patient's evaluation was to be «worst or the same as in the last 12 months».</p><p class="elsevierStylePara"><span class="elsevierStyleBold">Discussion</span></p><p class="elsevierStylePara">The socio-demographic characteristics of this study, carried out with populations of oncological and neurological patients, without HNS, are consistent with our results. The main age was similar, 75% of the main caregivers were women and about 50% corresponded to the patient's partners<span class="elsevierStyleSup">21</span>.</p><p class="elsevierStylePara">The concordance obtained with the EQ-5D in the components was generally high, with the exception of the anxiety component (the greatest disagreement; McNemar's test, p < 0.005). A study by Coucill et al<span class="elsevierStyleSup">22</span> found a worst concordance in the dimensions of pain and anxiety/depression, even tough there was, globally, a low concordance. The agreement degrees are evaluated in the studies depending on the kappa levels, according to the Altman proposal<span class="elsevierStyleSup">22</span>. This greater concordance in the physical dimensions<span class="elsevierStyleSup">21,23,24</span> is also observed in other studies that use the EQ-5D to evaluate the HRQL. One of these studies, with 124 patients with cerebro-vascular accident<span class="elsevierStyleSup">21</span>, with an acceptable agreement in the index EQ-5D, found an ICC of 0.70. In our study, the concordance was even higher with ICC = 0.887. In elder patients who attend the emergency services<span class="elsevierStyleSup">23</span>, a low agreement was obtained, with the ICC varying between 0.45-0.59 for the VAS between 0.22 and 0.49. The agreement we obtained for the punctuation of the EQ-5D and for the VAS as continuous variables was high, being higher for the index of EQ-5D between the caregivers and the patients than that obtained for VAS (ICC = 0.823).</p><p class="elsevierStylePara">Some studies where other questionnaires are used to evaluate HRQL, such as the Sickness Impact Profile<span class="elsevierStyleSup">25</span>, have obtained a ICC = 0.77 in the global result of the questionnaire. Sneeuw et al<span class="elsevierStyleSup">23</span> reviewed the published studies looking for the degree of agreement between patients and main caregivers where different instruments to evaluate HRQL were used. These authors observed that most of them found a moderate or good agreement, indicating a range of median correlation between 0.42 to 0.78. The difference in agreement between one and another study might appear simply because of the size; those with small samples (between 30 and 70 pairs) have a low agreement. A relation with the questionnaire's complexity could probably exist, but none of the studies demonstrated it; since there is more than one answer possibility to each dimension, the agreement would be larger. In our study, the questionnaire used offers 3 answer options for each dimension. Despite this fact, the degree of agreement was high, the sample being big enough to discard that the agreement was due to a random effect.</p><p class="elsevierStylePara">Considering the index of EQ-5D, the patient's punctuation is explained by that of the main caregiver. However, if we consider the explaining capacity taking into account the main caregiver's sex and the pathologic group, the punctuation is better, obtaining greater punctuations of the patient when the main caregiver is a woman, when the main caregiver's punctuation is higher and when the pathologic group is «other pathologies». When considering the punctuation of the VAS, the patients punctuation is explained by the main caregiver, having a better explaining capacity when also considering sex and age of the main caregiver. Higher punctuations of the patient are also obtained when the main caregiver is a man, when his age and punctuation are higher and when the patient defines his health status as «better than in the last 12 months».</p><p class="elsevierStylePara">With these studies' results we can see the importance of bearing in mind the main caregiver's evaluation. However, we think that to make decisions based on the patient's HRQL, the main caregiver's evaluation is not enough and we should think about it as an important complementary opinion.</p><p class="elsevierStylePara">In conclusion, a reasonable coincidence between the main caregiver and the patient was observed, However, there is also a main caregiver's overestimation that must be taken into consideration when using it as a prognosis of the patient's perception. The agreement degree varies sensibly with the type of dimension studied, with a higher agreement with regard to physical characteristics. The use of the caregivers evaluation can be useful to have an approximation to the patient's perception when he/she does not have the ability to communicate, and it is a better approximation if we consider the variables sex, pathological group, age of the caregiver or the evaluation of changes in the health state for the last 12 months.</p>" "pdfFichero" => "2v131n08a13125785pdf001.pdf" "tienePdf" => true "PalabrasClave" => array:2 [ "es" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Palabras clave" "identificador" => "xpalclavsec689510" "palabras" => array:3 [ 0 => "Calidad de vida" 1 => "Soporte nutricional domiciliario" 2 => "Cuidadores" ] ] ] "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec689511" "palabras" => array:3 [ 0 => "Quality of life" 1 => "Home nutritional support" 2 => "Caregivers" ] ] ] ] "tieneResumen" => true "resumen" => array:2 [ "es" => array:1 [ "resumen" => "Fundamento y objetivo: El objetivo de este estudio ha sido conocer el grado de acuerdo en la valoración de la calidad de vida relacionada con la salud (CVRS) entre los pacientes con soporte nutricional domiciliario y su cuidador, en las diferentes dimensiones, para poder valorarla cuando las dificultades de comunicación de estos pacientes no permiten hacerlo directamente. Asimismo, nos hemos propuesto establecer la capacidad predictiva de la puntuación de CVRS del cuidador sobre la del paciente, ajustada por otras variables. Método: Hemos valorado la CVRS con el cuestionario EuroQol-5D (EQ-5D) en 245 pacientes mediante entrevista directa a éstos y a sus cuidadores principales. Los pacientes procedían de 13 hospitales del Sistema Nacional de Salud y se seleccionaron de forma secuencial según su visita tuviera lugar en el hospital o en el domicilio. Resultados: El acuerdo obtenido en los componentes del EQ-5D fue elevado, con excepción del componente de ansiedad, donde se encontró una concordancia del 58% (test de McNemar, p = 0,005; kappa = 0,340, p < 0,001). Cuando estudiamos la concordancia entre la puntuación del paciente y la del cuidador, se obtuvo un coeficiente de correlación intra clase (CCI) de 0,887 (intervalo de confianza [IC] del 95%, 0,852-0,913). Al estudiar la capacidad predictiva de la puntuación del cuidador sobre la del paciente se obtuvo una R2 de 0,649, con un coeficiente de regresión de 0,803 (IC del 95%, 0,725-0,882), en el EQ-5D, mientras que en la escala visual analógica se obtuvo un CCI de 0,823 (IC del 95%, 0,771-0,863) y una R2 de 0,475, con coeficiente de regresión de 0,719 (IC del 95%, 0,617-0,822). Conclusiones: La valoración del cuidador es de utilidad para disponer de una aproximación a la percepción del paciente cuando éste no tiene capacidad para comunicarse, y constituye la mejor aproximación si se tienen en cuenta variables tales como el sexo, el grupo patológico, la edad del cuidador y la evaluación de los cambios en el estado de salud del paciente en los últimos 12 meses." ] "en" => array:1 [ "resumen" => "Background and objective: We intended to know the degree of agreement between the quality of life's perception of patients with home nutritional support and that of their main caregiver in the different dimensions. We also aimed to establish the predictive ability of the health-related quality of life (HRQL) punctuation of the caregiver about the patient, fixed up by other variables. Method: We evaluated the HRQL with the EuroQol-5D (EQ-5D) questionnaire in 245 patients by means of a direct interview with them and with their main caregiver. The patients came from 13 hospitals of the National Health System and they were selected sequentially according to their visits to the hospital or at home. Results: The agreement obtained in the EQ-5D components was high, except for the anxiety component, which had a 58% concordance (McNemar's test, p = 0.005; kappa = 0.340, p < 0.001). When studying the agreement between the patient punctuation and that of the main caregiver, an intraclass correlation coefficient (ICC) = 0.887 (95% confidence interval [CI], 0.852-0.913) was obtained. When studying the predictive ability of the caregiver's punctuation about the patient, we obtained an R2 = 0.649 with a regression coefficient of 0.803 (95% CI, 0.725-0.882) in the EQ-5D, while in the visual analogical scale an ICC = 0.823 (95% CI, 0.771-0.863) was obtained, and an R2 = 0.475 with a regression coefficient of 0.719 (95% CI, 0.617-0.822) was found. Conclusions: A caregiver's evaluation can be useful to have an approximation to the patient's perception when he/she does not have the ability to communicate. The approach is better if we consider the variables sex, pathological group, age of the caregiver or the evaluation of changes in the health state for the last 12 months." ] ] "multimedia" => array:4 [ 0 => array:7 [ "identificador" => "tbl1" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" "tabla" => array:1 [ "tablatextoimagen" => array:1 [ 0 => array:1 [ "tablaImagen" => array:1 [ 0 => array:4 [ "imagenFichero" => "2v131n08-13125785tab01.gif" "imagenAlto" => 1032 "imagenAncho" => 771 "imagenTamanyo" => 130328 ] ] ] ] ] "descripcion" => array:1 [ "en" => "ANNEX 1 Questionnaire EQ-5D used in the study: questionnaire + visual analogical scale" ] ] 1 => array:8 [ "identificador" => "tbl2" "etiqueta" => "TABLE 1" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" "tabla" => array:1 [ "tablatextoimagen" => array:1 [ 0 => array:1 [ "tablaImagen" => array:1 [ 0 => array:4 [ "imagenFichero" => "2v131n08-13125785tab02.gif" "imagenAlto" => 490 "imagenAncho" => 780 "imagenTamanyo" => 18122 ] ] ] ] ] "descripcion" => array:1 [ "en" => "General description of the study population" ] ] 2 => array:5 [ "identificador" => "tbl3" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" ] 3 => array:5 [ "identificador" => "tbl4" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "copyright" => "Elsevier España" ] ] "bibliografia" => array:2 [ "titulo" => "Bibliography" "seccion" => array:1 [ 0 => array:1 [ "bibliografiaReferencia" => array:25 [ 0 => array:3 [ "identificador" => "bib1" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "referenciaCompleta" => "In: WHO, editor. 10 years of WHO. 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