RESUMO
BACKGROUND: HTLV-1 is a neglected sexually transmitted infection despite being the cause of disabling neurological disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is no treatment for this infection and public health policies are essential to reduce its transmission. However, there are no data to support adequate cost-effective analysis in this field. The aim of this study was to obtain health state utility values for individuals with HAM/TSP and HTLV-1 asymptomatic carriers (AC). The impact of both states on quality of life (QoL) is described and compared to other diseases. METHODS: A cross-sectional observational study of 141 individuals infected with HTLV-1 (79 with HAM/TSP and 62 AC) from three Brazilian states (Rio de Janeiro, São Paulo and Alagoas) and from the United Kingdom. Participants completed a validated general health questionnaire (EQ-5D, Euroqol) from which country specific health state utility values are generated. Clinical and epidemiological data were collated. PRINCIPAL FINDINGS: Health state utility value for HAM/TSP was 0.2991. QoL for 130 reported clinical conditions ranges from 0.35 to 0.847. 12% reported their quality of life as worse as death. Low QoL was associated with severity rather than duration of disease with a moderate inverse correlation between QoL and Osame's Motor Disability Score (-0.4933) Patients who are wheelchair dependent had lowest QoL whilst those still walking unaided had the highest. AC also reported impaired QoL (0.7121) compared to general population. CONCLUSION: HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.
Assuntos
Portador Sadio/psicologia , Infecções por HTLV-I/psicologia , Doenças Negligenciadas/psicologia , Paraparesia Espástica Tropical/psicologia , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Brasil/epidemiologia , Portador Sadio/epidemiologia , Portador Sadio/virologia , Estudos Transversais , Feminino , Infecções por HTLV-I/epidemiologia , Infecções por HTLV-I/virologia , Nível de Saúde , Vírus Linfotrópico T Tipo 1 Humano/genética , Vírus Linfotrópico T Tipo 1 Humano/fisiologia , Humanos , Masculino , Pessoa de Meia-Idade , Doenças Negligenciadas/epidemiologia , Doenças Negligenciadas/virologia , Paraparesia Espástica Tropical/epidemiologia , Paraparesia Espástica Tropical/virologia , Reino Unido/epidemiologia , Adulto JovemRESUMO
OBJECTIVES: To measure parental perceptions of child vulnerability, as a precursor to developing a population-scale mechanism to mitigate harm after newborn screening. STUDY DESIGN: Participants were parents of infants aged 2-5 months. Parental perceptions of child vulnerability were assessed with an adapted version of the Vulnerable Baby Scale. The scale was included in the script for a larger study of telephone follow-up for 2 newborn blood screening samples (carrier status for cystic fibrosis or sickle cell hemoglobinopathy). A comparison sample was added using a paper survey with well-baby visits to an urban/suburban clinic. RESULTS: Sample sizes consisted of 288 parents in the cystic fibrosis group, 426 in the sickle cell hemoglobinopathy group, and 79 in the clinic comparison group. Parental perceptions of child vulnerability were higher in the sickle cell group than cystic fibrosis group (P < .0001), and both were higher than the clinic comparison group (P < .0001). Parental perceptions of child vulnerability were inversely correlated with parental age (P < .002) and lower health literacy (P < .015, sickle cell hemoglobinopathy group only). CONCLUSIONS: Increased parental perceptions of child vulnerability seem to be a bona fide complication of incidental newborn blood screening findings, and healthcare professionals should be alert to the possibility. From a public health perspective, we recommend routine follow-up after incidental findings to mitigate psychosocial harm.
Assuntos
Portador Sadio/psicologia , Triagem Neonatal/efeitos adversos , Pais/psicologia , Adulto , Anemia Falciforme/genética , Anemia Falciforme/psicologia , Portador Sadio/diagnóstico , Estudos de Casos e Controles , Fibrose Cística/genética , Fibrose Cística/psicologia , Humanos , Achados Incidentais , Lactente , Recém-Nascido , Triagem Neonatal/psicologia , Relações Pais-Filho , Inquéritos e Questionários , Síndrome , Adulto JovemRESUMO
OBJECTIVE: To conduct interviews with a multiyear sample of parents of infants found to have heterozygous status for sickle cell hemoglobinopathy or cystic fibrosis during newborn blood screening (NBS). STUDY DESIGN: Interviewers with clinical backgrounds telephoned parents, and followed a structured script that blended follow-up and research purposes. Recruiting followed several steps to minimize recruiting bias as much as possible for a NBS study. RESULTS: Follow-up calls were conducted with parents of 426 infant carriers of sickle cell hemoglobinopathy, and 288 parents of cystic fibrosis carriers (34.8% and 49.6% of those eligible). Among these, 27.5% and 7.8% had no recollection of being informed of NBS results. Of those who recalled a provider explanation, 8.6% and 13.0% appraised the explanation negatively. Overall, 7.4% and 13.2% were dissatisfied with the experience of learning about the NSB result. Mean anxiety levels were low but higher in the sickle cell hemoglobinopathy group (P < .001). Misconceptions that the infant might get the disease were present in 27.5% and 7.8% of parents (despite zero actual risk for disease). Several of these data were significantly predicted by NBS result, health literacy, parental age, and race/ethnicity factors. CONCLUSIONS: Patient-centered public health follow-up can be effective after NBS identifies carrier status. Psychosocial complications were uncommon, but harms were substantial enough to justify mitigation.
Assuntos
Anemia Falciforme/genética , Portador Sadio/psicologia , Fibrose Cística/genética , Triagem de Portadores Genéticos/normas , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Ansiedade/diagnóstico , Portador Sadio/diagnóstico , Estudos de Coortes , Feminino , Triagem de Portadores Genéticos/ética , Humanos , Lactente , Recém-Nascido , Consentimento Livre e Esclarecido , Masculino , Triagem Neonatal , Satisfação do Paciente , Relações Médico-Paciente , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The possibility to acquire sexually transmitted diseases generates bio-psycho-social conflicts affecting daily life of women. OBJECTIVE: To investigate the knowledge of women on the concept of being infected by the human papilloma virus (HPV) and to understand the significance they attributed to their condition as HPV carriers. MATERIAL AND METHOD: It is a qualitative study in which ten women were interviewed, after the result of a cytopathological exam suggesting HPV. Data were collected at the Center of Health School of the Universidade Estadual Paulista-UNESP-Brazil. RESULTS: The significant items were: deception and preoccupation about the cure, since they indicate that it is very deceptive to be infected with an incurable disease by a person whom they trust; the method of having sexual relations and being infected again; the necessity of care and of being optimistic to face the disease and the threat of cervix cancer originating anxiety. DISCUSSION: Orientations made by health professionals were efficacious to clarify the relationship with cancer development. It is possible to understand the necessity of assistance orientations and the opportunity to hear them, offering individualized quality care. This study also offers important elements to reinforce the educational role of health professionals, principally those referring to sexually transmitted infection and cancer, seeking prevention and early treatment with the offered information. However, there is no desire of finishing the subject regarding perception, thus there is much to discover about diseases related to human papilloma virus.
Assuntos
Portador Sadio/psicologia , Infecções por Papillomavirus/psicologia , Adolescente , Adulto , Idoso , Feminino , Humanos , Conhecimento , Pessoa de Meia-Idade , PercepçãoRESUMO
BACKGROUND: Human T cell lymphotropic virus type 1 (HTLV-I) can cause tropical spastic paraparesis/HTLV-1 associated myelopathy (TSP/HAM) and adult T cell leukaemia/lymphoma. More recently other diseases such as isolated peripheral polyneuropathy, myopathy, artropathy, and uveitis have been associated with this retrovirus. Only a few uncontrolled studies, without necessary exclusion criteria, have described mild cognitive deficits among TSP/HAM patients. To further clarify this the authors evaluated, through neuropsychological testing patients with TSP/HAM and asymptomatic infected carriers, comparing both groups with healthy controls. OBJECTIVES: To verify the presence of cognitive deficits among TSP/HAM patients and asymptomatic HTLV-1 infected carriers. In addition, the authors aimed to investigate if these deficits correlated with the degree of motor impairment in TSP/HAM patients. METHODS: From a cohort of 501 HTLV-1 infected people the authors selected, according to predefined inclusion and exclusion criteria, 40 asymptomatic HTLV-1 carriers and 37 TSP/HAM patients. Neuropsychological testing was blindly performed in both groups and their scores were compared with those obtained from controls. RESULTS: Both the HTLV-1 carrier group and the group of patients with TSP/HAM exhibited a lower performance in neuropsychological tests when compared with controls. Asymptomatic infected carriers and TSP/HAM patients did not differ in their cognitive results. Also, there was no relation between the degree of motor disability and cognitive deficits in the TSP/HAM group. Psychomotor slowing and deficits in the some domains characterised the neuropsychological impairment in HTLV-1 infection: verbal and visual memory, attention and visuomotor abilities. CONCLUSIONS: TSP/HAM as well as asymptomatic infection can be associated with mild cognitive deficits. This finding, if confirmed by further studies, will permit the inclusion of cognitive impairment among the neurological manifestations of HTLV-1.