Health‐related quality of life in narcolepsy

Daniels, Emma; King, Martin; Smith, Ian; Shneerson, John M.

doi:10.1046/j.1365-2869.2001.00234.x

Cited by 194 publications

(106 citation statements)

References 23 publications

(30 reference statements)

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“…The relationship between sleep disorders and perception of QL is also a subject of study among professionals in the health area, seeking to measure how sleep disorders affect the perception of patients and interfere with their environment, social relations, physical and psychological aspects [12][13][14][15] .…”

Section: Discussionmentioning

confidence: 99%

Quality of life in patients with narcolepsy: a WHOQOL-bref study

Rovere

Rossini

Reimão

2008

Arq. Neuro-Psiquiatr.

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-Objective: To evaluate the perception of Quality of Life (QL) in Brazilian patients with narcolepsy. Method: 40 adult patients aged between 20 and 72 years (mean=41.55; SD=14.50); (28 F; 12M), with the diagnosis of chronic narcolepsy were followed up at the outpatient clinic (Patient Group). The Control Group was composed of 40 adults. The instrument utilized was the World Health Organization Quality of Life (WHOQOL-BREF). Results: The two groups were homogeneous and no difference was found with regards to age, sex, and demographic characteristics. The perception of QL in physical, psychological and social domains showed lower scores in those patients with narcolepsy than in the control group (p<0.05). Concerning physical domain, all the aspects evaluated were significantly impaired, in patient group, including sleep satisfaction (p<0.001); energy for daily activities (p=0.039); capacity to perform activities (p=0.001); and capacity to work (p=0.001). Conclusion: The perception of QL showed severe impairment in patients with narcolepsy for physical, psychological and social domains.KEY WORDS: narcolepsy, sleep, sleep disorders, quality of life. Qualidade de vida de pacientes com narcolepsia: um estudo de WHOQOL-BreveResumo -Objetivo: Avaliar a percepção de qualidade de vida (QV) em pacientes com narcolepsia. Método: 40 pacientes com idades de 20 a 72 anos (média 41,55; desvio padrão=14,50); (28 F; 12 M), com diagnóstico de narcolepsia, crônica, seguidos em ambulatório (Grupo Paciente). O Grupo Controle foi composto de 40 adultos. O instrumento utilizado foi o Instrumento de Qualidade de Vida da Organização Mundial de Saúde (WHOQOL-BREF). Resultados: Os dois grupos foram homogêneos e não foram encontradas diferenças de idade, sexo e características demográficas. A percepção da QV nos domínios físico, psicológico e social mostrou escores menores nos pacientes com narcolepsia do que no Grupo Controle (p<0,05). Quanto ao domínio físico, todos os aspectos avaliados foram significantemente comprometidos, no grupo paciente, como a satisfação com o sono (p<0,001); energia para as atividades diárias (p=0,039); capacidade de desempenhar atividades (p=0,001); e capacidade de trabalho (p=0,001). Conclusão: A percepção de QV mostrou comprometimento acentuado nos pacientes com narcolepsia, nos domínios físico, psicológico e social. PALAVRAS-CHAVE: narcolepsia, sono, distúrbios do sono, qualidade de vida.

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Section: Discussionmentioning

confidence: 99%

Quality of life in patients with narcolepsy: a WHOQOL-bref study

Rovere

Rossini

Reimão

2008

Arq. Neuro-Psiquiatr.

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“…4,7,8,13,15,18 Similar problems emerge in employment, where adults with central hypersomnia have elevated rates of unemployment, and when employed, lower income levels. [18][19][20][21][22] In the quality of life domain, adults with central hypersomnia rate their quality of life as significantly lower than the general population, and at a similar magnitude to individuals with other chronic illnesses such as hypertension and chronic obstructive pulmonary disease. 23,24 Central hypersomnia is characterized by diffi culty performing everyday tasks and diffi culty with marital and other relationships.…”

Section: S C I E N T I F I C I N V E S T I G At I O N Smentioning

confidence: 96%

“…Parent-proxy report forms are available for all ages and self-report measures are available for ages 5-18. Forms are available for the following age groups: toddler (age 2-4), young child (5-7), children (8)(9)(10)(11)(12), and teen (13)(14)(15)(16)(17)(18).…”

Section: Appendix Pedsql Pediatric Quality Of Life Inventorymentioning

confidence: 99%

Psychosocial Characteristics of Children with Central Disorders of Hypersomnolence Versus Matched Healthy Children

Avis

Shen²,

Weaver³

et al. 2015

Journal of Clinical Sleep Medicine

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Background: Hypersomnia of central origin from narcolepsy or idiopathic hypersomnia (IHS) is characterized by pathological levels of excessive daytime sleepiness (EDS). Central hypersomnia has historically been underdiagnosed and poorly understood, especially with respect to its impact on daytime functioning and quality of life in children. Objective: Describe the psychosocial adjustment of children treated for narcolepsy or IHS on school performance, quality of life, and physical/extracurricular activities. Methods: Using a matched case control design, we compared child self-and parent-reported data from thirtythree 8-to 16-year-olds with an established diagnosis of narcolepsy or IHS, according to ICSD-2 criteria, to that of 33 healthy children matched by age, race/ethnicity, gender, and household income. Assessments evaluated academic performance, quality of life and wellness, sleepiness, and participation in extracurricular activities. Results: Compared to healthy controls, children with central hypersomnia had poorer daytime functioning in multiple domains. Children with hypersomnia missed more days of school and had lower grades than healthy controls. Children with hypersomnia had poorer quality of life by both parent and child report. Children with hypersomnia were signifi cantly sleepier, had higher BMI, and were more likely to report a history of recent injury. Finally, children with hypersomnia engaged in fewer after-school activities than healthy controls. Conclusions: A range of signifi cant psychosocial consequences are reported in children with hypersomnia even after a diagnosis has been made and treatments initiated. Health care professionals should be mindful of the psychosocial problems that may present in children with hypersomnia over the course of treatment. Keywords: children, daytime sleepiness, hypersomnolence, daytime functioning Citation: Avis KT, Shen J, Weaver P, Schwebel DC. Psychosocial characteristics of children with central disorders of hypersomnolence versus matched healthy children.

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“…Desde los diferentes enfoques psicológicos, se había pensado el síndro-me de narcolepsia, desde un plano investigativo, en las consecuencias psicosociales del síndrome (Dinges, 1989;Ramos, 1998, Marín y Vinaccia, 2004b, debido a que es una enfermedad crónica y las consecuencias tanto para el paciente como para la familia, son difíciles de afrontar. Otros estudios, han indagado la probabilidad de accidentes laborales y de tremsito en los pacientes narcolépticos; Las funciones neviropsicológicas, afectadas por este trastorno del sueño, en cuanto al tiempo de reacción, funciones ejecutivas y memoria; la calidad de vida relacionada con la salud, entre otras (Dinges, 1989;Conesa et al, 1998;Bladin, 2000;Daniels et al 2001;Dement y Vaughan, 2000;Ramos, 1998;Marín y Vinaccia, 2004a;Cano Miró et al, 2004). Sin embargo, la conceptualización psicológica del síndrome (sin el ánimo de psicologizarlo), no se había abordado hasta ahora.…”

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Modelo cognitivo comportamental del síndrome de narcolepsia-cataplejía: exposición teórica

Agudelo¹,

Vinaccia²

2005

RPPC

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El reciente desarrollo de la medicina comportamental del sueño, ha llevado a diferentes autores a pensar en la conceptuación explicativa de las diferentes patologías del sueño. Si bien es cierto que se ha avanzado en los diferentes modelos explicativos del sueño, como el modelo interactivo conductual, el modelo comportamental del sueño, el modelo de regulación del sueño, también es cierto que las conceptualizaciones comportamentales, hasta ahora y por lo general, habían estado de lado de comprensión del fenómeno del insomnio, y las tendencias explicativas de la somnolencia excesiva diurna, son de aparición reciente. El objetivo de este estudio, es hacer una revisión teóri-ca del planteamiento cognitivo comportamental del síndrome de narcolepsia cataplejía, planteado recientemente, analizando los puntos centrales de dicho modelo, en la explicación y la intervención de la narcolepsia, como aporte importante dentro de la medicina comportamental del sueño.Palabras clave: Narcolepsia, cataplejía, parálisis del sueño, alucinaciones hipnagógi-cas, modelo comportamental del sueño, medicina comportamental del sueño. Cognitive-behavioml model of naicolepsy-cataplexy syndrome: A theoretical viewRecent developments in behavioral sleep medicine have been made conceming conceptualization and explanation of different sleep disorders. Although it is certain that advances have been made in relation to different explanatory sleep models, such as the behavioral interactive model, the behavioral sleep model, and the sleep regulation model, it is also true that behavioral conceptualizations suggested until now had been focused on the comprehension of the phenomenon of insomnia. However, explanatory models of day time sleepiness have emerged only recently. In this study we review the cognitive-behavioral formulation of the narcolepsy-cataplexy syndrome. A model is presented, analyzing the central points of such model in relation to explanation and intervention aspects of narcolepsy, and suggesting the model as an important contribution to behavioral sleep medicine.

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Health‐related quality of life in narcolepsy

Cited by 194 publications

References 23 publications

Quality of life in patients with narcolepsy: a WHOQOL-bref study

Quality of life in patients with narcolepsy: a WHOQOL-bref study

Psychosocial Characteristics of Children with Central Disorders of Hypersomnolence Versus Matched Healthy Children

Modelo cognitivo comportamental del síndrome de narcolepsia-cataplejía: exposición teórica

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