RESUMO
BACKGROUND: Lacking protective antibodies, patients with primary antibody deficiencies (PADs) experience frequent respiratory tract infections, leading to chronic pulmonary damage. Macrolide prophylaxis has proved effective in patients with chronic respiratory diseases. OBJECTIVE: We aimed to test the efficacy and safety of orally administered low-dose azithromycin prophylaxis in patients with PADs. METHODS: We designed a 3-year, double-blind, placebo-controlled, randomized clinical trial to test whether oral azithromycin (250 mg administered once daily 3 times a week for 2 years) would reduce respiratory exacerbations in patients with PADs and chronic infection-related pulmonary diseases. The primary end point was the number of annual respiratory exacerbations. Secondary end points included time to first exacerbation, additional antibiotic courses, number of hospitalizations, and safety. RESULTS: Eighty-nine patients received azithromycin (n = 44) or placebo (n = 45). The number of exacerbations was 3.6 (95% CI, 2.5-4.7) per patient-year in the azithromycin arm and 5.2 (95% CI, 4.1-6.4) per patient-year in the placebo arm (P = .02). In the azithromycin group the hazard risk for having an acute exacerbation was 0.5 (95% CI, 0.3-0.9; P = .03), and the hazard risk for hospitalization was 0.5 (95% CI, 0.2-1.1; P = .04). The rate of additional antibiotic treatment per patient-year was 2.3 (95% CI, 2.1-3.4) in the intervention group and 3.6 (95% CI, 2.9-4.3) in the placebo group (P = .004). Haemophilus influenzae and Streptococcus pneumoniae were the prevalent isolates, and they were not susceptible to macrolides in 25% of patients of both arms. Azithromycin's safety profile was comparable with that of placebo. CONCLUSION: The study reached the main outcome centered on the reduction of exacerbation episodes per patient-year, with a consequent reduction in additional courses of antibiotics and risk of hospitalization.
Assuntos
Azitromicina/administração & dosagem , Infecções por Haemophilus/prevenção & controle , Haemophilus influenzae/imunologia , Pneumonia Pneumocócica/prevenção & controle , Streptococcus pneumoniae/imunologia , Adulto , Azitromicina/efeitos adversos , Relação Dose-Resposta a Droga , Método Duplo-Cego , Feminino , Infecções por Haemophilus/imunologia , Humanos , Masculino , Pessoa de Meia-Idade , Pneumonia Pneumocócica/imunologia , Doenças da Imunodeficiência PrimáriaRESUMO
OBJECTIVE: We assessed the health-related quality of life (HRQoL) in CVID adults receiving different schedules of immunoglobulin replacement therapy (IgRT) by intravenous (IVIG), subcutaneous (SCIG), and facilitated (fSCIG) preparations. For these patients, IgRT schedule was chosen after a period focused on identifying the most suitable individual option. METHODS: Three hundred twenty-seven participants were enrolled in a prospective, observational, 18-month study. Participants received IgRT for at least 2 years. The first 6 months were devoted to the educational process during which the choices related to IgRT were regularly re-assessed, and the shift to alternative regimen was permitted. During the following 12 months, clinical data were prospectively collected, and only patients who did not further modify their IgRT schedule were included in the analysis of HRQoL measured by CVID_QoL, a specific instrument, and by GHQ-12, a tool to assess minor psychiatric nonpsychotic disorders. RESULTS: Three hundred four patients were included in the analysis. CVID_QoL global score and its dimensions (emotional functioning, relational functioning, gastrointestinal symptoms) were similar in IVIG, SCIG, and fSCIG recipients. Patients receiving IgRT by different routes of administration reported similar capacity to make long-term plans, discomfort due to therapy, and concern to run out of medications. Multivariate analysis revealed the GHQ-12 status, but not the IgRT mode of administration, as the major factor impacting on treatment-related QoL items, and a significant impact of age on discomfort related to IgRT. CONCLUSIONS: IgRT schedules do not impact the HRQoL in CVID if the treatment is established after an extensive educational period focused on individualizing the best therapeutic regimen.
Assuntos
Imunodeficiência de Variável Comum/tratamento farmacológico , Imunoglobulinas/administração & dosagem , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Vias de Administração de Medicamentos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
OBJECTIVE: To test the effectiveness of an educational intervention including "face to face" training, compared to a standard information program, to reduce microstomia in women with systemic sclerosis. DESIGN: Single-blind, two-arm, randomized controlled study with a 12-month follow-up period. SETTING: Hospital wards of a large Italian dermatological reference center. SUBJECTS: Female inpatients with diagnosis of systemic sclerosis. INTERVENTIONS: For both groups an information brochure and an audio-visual DVD were developed specifically for the study. The control group was assigned to educational materials alone (i.e. brochures and DVD), while the experimental group, in addition to the same educational materials, received specific "face-to-face" interventions, repeated at each follow-up visit. MAIN MEASURES: Primary outcome was measurement of the opening of the mouth. Secondary outcomes was the self-reported mouth disability. RESULTS: The intention-to-treat analysis included 63 patients. Compared to the baseline measurement, we observed an increase of the mouth opening of 0.31 cm (95% confidence interval: 0.13-0.49), P = 0.003; in the control group, the increase was 0.13 cm (95% confidence interval: 0.01-0.25), P = 0.06. The difference in improvement between the two groups was not statistically significant (P = 0.10); however, it reached statistical significance in the per-protocol analysis (39 patients, P = 0.02). CONCLUSION: Face-to-face nursing rehabilitation training seems to improve microstomia to a greater extent, when compared to a standard intervention based only on written and audio-visual materials.
Assuntos
Microstomia/reabilitação , Exercícios de Alongamento Muscular , Educação de Pacientes como Assunto , Escleroderma Sistêmico/complicações , Idoso , Feminino , Humanos , Microstomia/etiologia , Pessoa de Meia-Idade , Autogestão , Método Simples-CegoRESUMO
Skin conditions often have a severe impact on the physical and psychosocial domains of patients' quality of life, but the relationship between these domains has been studied little. This study estimated the fraction of psychosocial burden that may be attributable to symptoms, using the Skindex-17 quality of life questionnaire (symptoms and psychosocial scales) in 2,487 outpatients. The excess proportion of psychosocial burden for each skin condition was computed. Overall, 79.8% of the psychosocial burden of patients with severe symptoms may be attributable to the symptoms. For patients with mild symptoms this figure is 49.7%. A great heterogeneity was observed, from -0.9% for patients with scars, up to more than 90% for conditions such as lichen planus and psoriasis. While these results will have to be confirmed in longitudinal studies, they seem to indicate that, by targeting specific symptoms, a substantial portion of the psychosocial burden of skin diseases could be spared.
Assuntos
Efeitos Psicossociais da Doença , Qualidade de Vida , Dermatopatias/diagnóstico , Dermatopatias/psicologia , Estudos Transversais , Humanos , Índice de Gravidade de Doença , Dermatopatias/complicações , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Genetic findings suggesting a lower susceptibility to melanoma in patients with vitiligo are supported by recent clinical studies. Nonmelanoma skin cancer (NMSC) has also been studied, but mainly in small samples, and with conflicting results. OBJECTIVE: We sought to study the relative risk (RR) of melanoma and NMSC in patients with vitiligo compared with that in patients seen for vascular surgery. METHODS: The frequency of melanoma and NMSC was compared between patients with vitiligo and patients seen for vascular surgery. Occurrence of skin cancer was compared by computing RR and modeled using multiple logistic regression. RESULTS: Overall, the crude RR for melanoma was 0.24 (95% confidence interval [CI] 0.13-0.45) in patients with vitiligo compared with those with a nondermatologic condition (occurrence 1.1, 95% CI 0.5-2.0 in patients with vitiligo and occurrence 4.5, 95% CI 3.8-5.4 in the control cohort). The crude RR for NMSC was 0.19 (95% CI 0.14-0.17) and the occurrence was 3.8 (95% CI 2.7-5.2) among patients with vitiligo and 19.6 (95% CI 18.0-21.4) in control subjects. Patients with vitiligo who underwent phototherapy had a markedly higher risk of both cancers. CONCLUSIONS: In our large study, patients with vitiligo have a decreased risk of developing skin neoplasms, even considering that a larger proportion in this patient group is exposed to higher levels of ultraviolet radiation.
Assuntos
Melanoma/epidemiologia , Neoplasias Cutâneas/epidemiologia , Vitiligo/epidemiologia , Adulto , Carcinoma Basocelular/epidemiologia , Carcinoma de Células Escamosas/epidemiologia , Estudos de Coortes , Feminino , Ficusina/uso terapêutico , Humanos , Incidência , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Fármacos Fotossensibilizantes/uso terapêutico , Risco , Fatores de Risco , Terapia Ultravioleta , Vitiligo/tratamento farmacológicoRESUMO
Psychosocial problems are frequent among patients with psoriasis. The aim of this study was to analyse the prevalence of some specific psychosocial issues. These were evaluated in 936 patients using the emotions and functioning scales of the Skindex-29 questionnaire. The problems most frequently experienced were: shame, anger, worry, difficulties in daily activities and social life. All problems were associated with the severity of psoriasis and with depression or anxiety. Shame, worry and annoyance were more frequent in women than in men, and shame and anger were associated with a low level of education. Impairment in work/hobbies was significantly higher in patients with palmoplantar psoriasis and those with arthro-pathic psoriasis. In conclusion, clinicians could gain important insights about their patients by looking at the single items of a quality of life instrument, to identify patients with high levels of emotional and social problems, in order to improve quality of care.
Assuntos
Passatempos , Psoríase/psicologia , Qualidade de Vida/psicologia , Participação Social/psicologia , Trabalho , Ira , Ansiedade/epidemiologia , Depressão/epidemiologia , Escolaridade , Feminino , Humanos , Relações Interpessoais , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Psoríase/complicações , Índice de Gravidade de Doença , Fatores Sexuais , Vergonha , Inquéritos e QuestionáriosRESUMO
The relationship between quality of life (QoL) and skin lesion improvement due to psoriasis treatment has been recently underlined. Our objective was to study the self-reported disease severity reduction and QoL during spa treatments and identify predictors of psoriasis improvement. Patients were assessed before and after spa treatment with a disease-specific QoL questionnaire (Skindex-17) and self-administered psoriasis area and severity index (SAPASI). Their correlations were tested. Factors predicting a reduction in Skindex-17 or in SAPASI score were evaluated through regression analysis. Significant mean overall reductions in SAPASI (27%) and Skindex-17 scores (psychosocial: 6%; symptoms: 2%) were achieved. However, 51% of patients reporting SAPASI improvement also reported a worsened QoL. Pearson's correlation between the SAPASI and Skindex-17 scores was poor (r=0.26 for SAPASI-symptoms and r=0.40 for SAPASI-psychosocial). Logistic regression analysis identified the age of psoriasis onset before 30 years (OR=3.81, 95% CI 1.22-11.95, p=0.02) and a basal Skindex-17 symptoms value greater than 5 (OR=3.37, 95% CI 1.12-10.08, p=0.03) as predictive of both SAPASI and Skindex-17 score reductions. Age-of-onset-based stratification identifies the subset most likely to respond to spa treatment. Combining the Skindex-17 with SAPASI provides a more comprehensive patient-centered assessment. We recommend this assessment for psoriasis patients undergoing spa treatment.
Assuntos
Psoríase/epidemiologia , Psoríase/terapia , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Adulto , Idade de Início , Idoso , Balneologia , Distribuição de Qui-Quadrado , Feminino , Humanos , Itália/epidemiologia , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Psoríase/psicologia , Autorrelato , Estatísticas não Paramétricas , Resultado do Tratamento , Terapia UltravioletaRESUMO
UNLABELLED: Psychological wellbeing and risk of anxiety/depression in nursing students, measured with the General Health Questionnaire-12. Introduction. Psychological wellbeing facilitates the learning performance while emotional problems such as anxiety/depression limit it and may impact on future professional practice. OBJECTIVES: To assess the prevalence of anxiety/depression in nursing students in Rome, at the beginning of the annual course. METHODS: An observational study was conducted administering the 12 items General Health Questionnaire (GHQ-12) to 601 students at the beginning of the annual course. Students were labeled at risk for anxiety and depression with GHQ-12 scores >5. A logistic regression model was used to identify factors associated to anxiety and depression. RESULTS: Thirty-four per cent (39% of the females) of the students were at risk for anxiety/depression. The risk was higher for female students (OR=2.9; 95%CI 1.6-5.2; p<0.001), in those unsatisfied with the academic results (OR 2.3; 95%CI 1.4-3.9; p=0.002) and with their general health status (OR=0.4; 95%CI 0.3-0.7; p≤0.001). CONCLUSIONS: The risk for anxiety and depression is high among nursing students, especially for females. A screening since the first year would help to identify subject at risk that could benefit from specific interventions.
Assuntos
Ansiedade/epidemiologia , Depressão/epidemiologia , Estresse Psicológico/epidemiologia , Estudantes de Enfermagem , Inquéritos e Questionários , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Risco , Medição de Risco , Adulto JovemRESUMO
BACKGROUND: In dental diseases, significant discrepancies were observed in the oral health-related quality of life evaluation between patients and providers. Few studies have been performed specifically on the impact of oral mucosal diseases on patients' health. OBJECTIVE: We sought to compare the evaluation of the severity of oral mucosal conditions in providers and patients. METHODS: Patients with an oral mucosal condition were recruited at the oral health care unit of a dermatologic hospital. Severity was evaluated both by the physician and by the patient, using a global severity assessment score on a 5-point scale. The 14-item Oral Health Impact Profile was used to evaluate oral health-related quality of life, the 12-item General Health Questionnaire for psychologic problems, and the 20-item Toronto Alexithymia Scale for alexithymia (ie, the difficulty in identifying and expressing feelings). RESULTS: Data were complete for 206 patients. The agreement between patients' and providers' evaluation was very low (Cohen κ = 0.18). Severity was particularly underestimated by the physician in patients with alexithymia (43% compared with 25% of patients with no alexithymia) and with psychologic problems (44% vs 25%). LIMITATIONS: Because of the high number of different conditions, and thus the small figures in each group, it was not possible to analyze the concordance between patient and provider in each single condition. CONCLUSION: Even in the severity assessment of his or her own disease, it is plausible that a patient does not provide a simple clinical evaluation, but includes subjective aspects. It is important for the physician to take into account the severity the patient perceives in making treatment decisions, and in evaluating clinical improvement.
Assuntos
Doenças da Boca/fisiopatologia , Mucosa Bucal/fisiopatologia , Médicos , Qualidade de Vida , Autoavaliação (Psicologia) , Adolescente , Adulto , Estudos Transversais , Feminino , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Saúde Bucal , Sensibilidade e Especificidade , Índice de Gravidade de Doença , Perfil de Impacto da Doença , Inquéritos e Questionários , Adulto JovemRESUMO
Family history can provide important information about a patient's psychological status, and thus their disease risk. A multicentric case-control study on family dysfunction was performed on 59 patients with psoriasis (63.7%), atopic dermatitis (11.9%) or alopecia areata (25.4%), and 47 patients with minor skin problems (controls), all attending a dermatological clinic or a psychodermatological consultation. The mean age of subjects was 47.7 years in the cases and 48.8 years in the controls. Women represented 53% of cases and 62% of controls. Patients and controls first completed the General Health Questionnaire (GHQ-12) and the Toronto Alexithymia Scale (TAS-20) questionnaire. The overall prevalence of anxiety and/or depression in cases was 43.3% (71.4% in atopic dermatitis). To collect the family history a genogram was built by the interviewer during a semi-structured interview. It can show dysfunction in the family, as it highlights alliances and ruptures, generational repetition of behaviours of dependence or vulnerability, and traumatic events. The mean (± standard deviation) genogram score was 6.7 ± 3.3 in the cases and 3.0 ± 2.4 in the controls (p<0.001). The cases had three times the risk of having moderate family dysfunction compared with controls and 16 times the risk of having a severe family dysfunction. The genogram score was correlated with the severity of the disease as evaluated by the patient. In conclusion, family dysfunction may play an important role in the onset or the exacerbation of psoriasis, alopecia, and atopic dermatitis.
Assuntos
Alopecia em Áreas/psicologia , Dermatite Atópica/psicologia , Relações Familiares , Psoríase/psicologia , Estresse Psicológico/complicações , Adulto , Sintomas Afetivos/complicações , Sintomas Afetivos/epidemiologia , Idoso , Alopecia em Áreas/diagnóstico , Alopecia em Áreas/epidemiologia , Análise de Variância , Ansiedade/complicações , Ansiedade/epidemiologia , Bélgica/epidemiologia , Estudos de Casos e Controles , Distribuição de Qui-Quadrado , Depressão/complicações , Depressão/epidemiologia , Dermatite Atópica/diagnóstico , Dermatite Atópica/epidemiologia , Feminino , Humanos , Entrevistas como Assunto , Itália/epidemiologia , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Razão de Chances , Psoríase/diagnóstico , Psoríase/epidemiologia , Medição de Risco , Fatores de Risco , Índice de Gravidade de Doença , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Inquéritos e QuestionáriosRESUMO
In dermatology, several instruments are available to measure health-related quality of life (HRQoL) of patients. They vary in content emphasis and in the extent to which their measurement properties have been investigated and reported. In this study, we summarized five dermatology- and psoriasis-specific HRQoL questionnaires into a new psoriasis-specific questionnaire, the Comprehensive Appraisal of Life Impact of PSOriasis (CALIPSO). The questionnaires were completed by 936 patients with a diagnosis of psoriasis. Rasch's unidimensional measurement model was used to verify the construct validity and the operational characteristics of each instrument separately. The items with the best performance according to the Rasch model were selected. The final 30 items constitute the CALIPSO. Responses are given on a 3-point scale: "never", "sometimes/quite frequently", "often/all the time". The properties of the CALIPSO now need to be verified through the analysis of new data from different populations of people with psoriasis. In future, clinicians may use it without having to decide amongst several competing scales, to evaluate HRQoL in patients with psoriasis.
Assuntos
Psoríase , Qualidade de Vida , Inquéritos e Questionários , Humanos , Psicometria , SoftwareRESUMO
There is increasing interest in the management of chronic diseases through patient self-efficacy procedures. Very few studies are available assessing the efficacy of empowerment-based educational interventions for psoriasis patients. To evaluate an educational programme for increasing empowerment, in a spa setting (Comano, Italy). An educational intervention with pre-post test for empowerment evaluation was employed with patients assigned either to a control (balneotherapy) or an experimental group (balneotherapy plus empowerment-based educational interventions) (quasi-experimental). The outcome measures were self-reported scores through validated tools for empowerment, severity of disease and quality of life, assessed before and after a single two-hour empowerment-based educational intervention. A total of 136 patients completed the study (control n. 49; experimental n. 87). The experimental group reported higher levels of empowerment with improved knowledge about the disease as compared to the control group. After the balneotherapy, both groups reported a positive effect on quality of life. Patients' characteristics linked to intervention effectiveness were identified. A single empowerment-based educational intervention has the potential to increase psoriasis patients' empowerment by means of increased knowledge. It is advisable to promote it as a standardized, low-cost practice for motivated patients.
Assuntos
Balneologia , Psoríase/psicologia , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Poder Psicológico , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
Epidermolysis bullosa is a rare, inherited group of disorders characterized by blistering of the skin following friction or mechanical trauma. The aim of this study was to assess the family burden of epidermolysis bullosa in children aged 0-7 years. A postal survey was conducted. The perceived severity of the disease was evaluated by the caregivers, using the Patient Global Assessment 5-point scale. The caregiver received the Family Strain Questionnaire and the 12-item General Health Questionnaire to assess the probable presence of depression/anxiety. A single-item analysis was also performed for questions related to the burden of disease. Forty-two families were invited to participate. Data from 28 young patients and their caregivers were analysed (response rate 66.7%). The family burden increased with increasing caregiver's perceived disease severity, with increasing patient's body surface involved, and if parents had depression/anxiety, reaching statistical significance in several Family Strain Questionnaire scales. The family burden due to epidermolysis bullosa is very high independent of disease type/subtype.
Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Epidermólise Bolhosa/psicologia , Relações Familiares , Pais/psicologia , Adaptação Psicológica , Adulto , Ansiedade/etiologia , Criança , Pré-Escolar , Estudos Transversais , Depressão/etiologia , Epidermólise Bolhosa/classificação , Epidermólise Bolhosa/diagnóstico , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Recém-Nascido , Itália , Masculino , Percepção , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
While empowerment is an outcome pursued by advocacy groups and health care providers, no data are yet available about empowerment in patients with psoriasis in the literature. Our aim was to develop a tool for measuring levels of empowerment in psoriatic patients, and to assess its validity and reliability. A cross-sectional study among outpatients with psoriasis was carried out. Principal component analysis was performed to validate the questionnaire and to measure any associations with demographic and clinical data. The 12-item questionnaire (Psoriasis Empowerment Enquiry in the Routine practice, or PEER) showed acceptable consistency and reliability, and three distinct and interpretable factors have been identified: Knowledge, Experience, Skills. Patients older than 44 years and patients with psoriasis for more than one year showed statistically significantly higher levels of empowerment. Neither educational level nor the number of consultations influenced the global empowerment score (GES). A link between GES and prescribed therapy was found, suggesting that patients receiving systemic drugs have better knowledge, more insight and superior skills to manage their psoriasis. We conclude that PEER is an appropriate tool to assess empowerment among patients with psoriasis and may be used to evaluate the efficacy of educational interventions. Further studies are needed to assess its convergent validity and to improve its reliability.
Assuntos
Poder Psicológico , Psoríase/psicologia , Inquéritos e Questionários , Adulto , Fatores Etários , Estudos Transversais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Cooperação do Paciente , Análise de Componente Principal , Psoríase/terapiaRESUMO
The beneficial health effects of emotional writing disclosure (ED) on several chronic diseases have been reported. The aim of this pilot study was to investigate the effects of two ED techniques on psoriatic patients treated with ultraviolet B (UVB) therapy. Forty patients were randomly assigned to two different ED treatments (according to Pennebaker [PW], writing about stressful events, to King [KW], writing about major life goals), or to a control group (CG). Disease severity and quality of life (QoL) were assessed at baseline, halfway through and at the end of UVB treatment, and 4 months after ED. Outcome measures were the PASI and SAPASI scores, the Skindex-29, and the GHQ-12, to assess disease severity, health-related QoL and psychological wellbeing, respectively. Increases in SAPASI scores were recorded between end of therapy and the final assessment in KW (p: 0.07) and CG individuals (p: <0.05), whereas no differences were found in PW patients. Significant differences in Skindex-29 values between PW and the other groups were reported.Patients allocated to the PW group had a longer period of remission after phototherapy. This provides preliminary evidence that such a simple and inexpensive tool may play a role in enhancing treatment efficacy and QoL.
Assuntos
Emoções , Fototerapia , Psoríase/tratamento farmacológico , Terapia Ultravioleta , Indicadores Básicos de Saúde , Humanos , Psoríase/psicologia , Qualidade de Vida , Índice de Gravidade de Doença , Estresse Psicológico , Terapia Ultravioleta/métodos , RedaçãoRESUMO
INTRODUCTION: The aim of the study was to assess job satisfaction and risk of depression/anxiety in researchers of a Research Institute in Rome. METHODS: The personnel was invited to participate in a survey filling in the General Health Questionnaire (GHQ.12) for the screening of depression/anxiety disorders and the evaluation of psychological stress, and a validated satisfaction questionnaire. RESULTS: A descriptive analysis was conducted and logistic regressions were performed examining the following outcomes in separate models: being positive at the GHQ and being satisfied. The response rate was 52%. Among participants 15.1% were at risk of depression/anxiety, 77.4% were stressed and 66% were dissatisfied. Major determinants for dissatisfaction were "job opportunities" "communication between units", "judgment about spaces" "economic rewards", "participation in the organization of the unit". CONCLUSIONS: Dissatisfaction with "economic rewards" was predictive of depression, independently of sex, age and job duration. Areas of possible intervention were identified.
Assuntos
Pesquisa Biomédica , Satisfação no Emprego , Qualidade de Vida/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
BACKGROUND: A rapidly expanding pandemic of the new coronavirus has become the focus of global scientific attention. Data are lacking on the impact of the pandemic caused by the severe acute respiratory syndrome coronavirus 2 on health-related quality of life among patients affected by primary antibody deficiencies (PADs). OBJECTIVE: To identify factors impacting the health-related-quality of life (HRQOL) among Italian patients affected by PADs switched to remote assistance at the time of the coronavirus disease 2019 pandemic. METHODS: The quality of life was surveyed in 158 patients with PADs by the Common Variable Immune Deficiency Quality of Life questionnaire, a disease-specific tool, and by the 12-item General Health Questionnaire, a generic tool to assess the risk of anxiety/depression. Since the beginning of the coronavirus disease 2019 epidemic, we shifted all patients with PADs to home therapy, and activated remote visits. Questionnaires were sent by email 4 weeks later. Common Variable Immune Deficiency Quality of Life questionnaire and 12-item General Health Questionnaire data scores were compared with the same set of data from a survey done in 2017. RESULTS: Of 210 patients, 158 (75%) agreed to participate. The quality of life was worse in the group of patients who were at risk of anxiety/depression at the study time. HRQOL was similar in patients forced to shift from hospital-based to home-based immunoglobulin treatment and in patients who continued their usual home-based replacement. The risk of anxiety/depression is associated with pandemia caused by the severe acute respiratory syndrome coronavirus 2 and with patients' fragility, and not with related clinical conditions associated with common variable immune deficiencies. Anxiety about running out of medications is a major new issue. CONCLUSIONS: The coronavirus disease 2019 epidemic impacted HRQOL and the risk of anxiety/depression of patients with PADs. The remote assistance program was a useful possibility to limit personal contacts without influencing the HRQOL.
Assuntos
Ansiedade/psicologia , Imunodeficiência de Variável Comum/psicologia , Imunodeficiência de Variável Comum/terapia , Infecções por Coronavirus/prevenção & controle , Depressão/psicologia , Imunoglobulinas/administração & dosagem , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , COVID-19 , Infecções por Coronavirus/epidemiologia , Feminino , Terapia por Infusões no Domicílio/psicologia , Humanos , Infusões Subcutâneas , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Pneumonia Viral/epidemiologia , Inquéritos e Questionários , Telemedicina , Adulto JovemRESUMO
BACKGROUND: Pemphigus is a rare but severe autoimmune disease caused by autoantibodies directed against desmosomes, and clinically characterized by bullae and painful erosions of the skin and mucous membranes. The two major subtypes, vulgaris and foliaceus, are distinguished by the depth of the cleavage plane in the epidermis. Very few studies have investigated the quality of life (QoL) of patients with pemphigus, all reporting a strong impact on physical and emotional status. OBJECTIVES: We sought to achieve an exhaustive description of health status in a large sample of patients with pemphigus, assess the impact on QoL, and define a minimum set of QoL tools for clinical practice. METHODS: In all, 139 patients with pemphigus enrolled at our bullous skin diseases department from February 2007 to February 2008 were given the Medical Outcome Study 36-item short form health survey questionnaire to assess the health status, the Skindex-29 to evaluate the impact of dermatologic-specific aspects, and the 12-item General Health (GH) Questionnaire to detect patients with psychological problems. Clinical severity of the disease was assessed by a dermatologist by the Physician Global Assessment index and the Ikeda index. RESULTS: A strong impact of pemphigus on health status was observed, especially in women and older patients, and in patients with mucocutaneous involvement. A significant association between disease severity and lower Medical Outcome Study 36-item short-form questionnaire values was also observed. Patients with pemphigus showed a markedly impaired overall QoL compared with healthy control subjects on all 3 Skindex-29 scales (symptoms mean scores 37 vs 8, in patients and control subjects, respectively; emotions 37 vs 14; functioning 33 vs 4; P < .001); disease severity was also significantly associated with Skindex-29 scores, on all 3 scale scores for both Physician Global Assessment and Ikeda values (P < .05). GH Questionnaire positivity, reflecting probable minor psychiatric nonpsychotic conditions, such as depression and anxiety, was detected in 39.7% of patients. LIMITATIONS: The small sample size in the different treatment groups prevented a more detailed analysis, failing to highlight an association between treatment type and QoL impairment. CONCLUSIONS: In this study we described a strong impact of pemphigus on patients' QoL both for the dermatology-specific and the GH aspects. The prevalence of patients with GH Questionnaire positivity was also very high (almost 40%). The introduction of the proposed minimal set of QoL evaluation tools would provide additional useful information to guide clinicians in the treatment of these patients.
Assuntos
Pênfigo/fisiopatologia , Pênfigo/psicologia , Qualidade de Vida , Índice de Gravidade de Doença , Adulto , Sintomas Afetivos , Idoso , Feminino , Nível de Saúde , Humanos , Imunossupressores/uso terapêutico , Masculino , Pessoa de Meia-Idade , Pênfigo/tratamento farmacológico , Inquéritos e Questionários , Adulto JovemRESUMO
AIM: The needs assessment of mothers with children affected by dermatitis is as crucial as technical interventions. The child's disease may modify mothers' priorities of needs. Aim of the study is to identify priority of needs in mothers of children admitted to a dermatological hospital (IDI-IRCSS) in Rome. Data were collected between May and June 2007. The Needs Assessment Questionnaire and the Patient Global Assessment (PGA) were distributed to 160 mothers to assess the perceived severity of the disease. RESULTS: The main needs were to receive more information about diagnosis (59%), more care after discharge (48%), more information about treatments (36%) a better symptoms control (36%) and to receive informational material (33%). Mothers who perceived very severe the illness of their children expressed an higher need to receive more care after discharge (63%) and a better symptoms control (56%) compared to those with lower severity scores. The need of information about diagnosis is the first priority irrespective of the perceived severity of the illness. CONCLUSIONS: Information and education are crucial to involve mothers in the caring process. Nurses can improve critical areas of dermatological care through identification of needs.