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1.
Psychooncology ; 33(3): e6329, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38502048

RESUMO

PURPOSE: This review aimed to identify, characterize, map, and summarize existing knowledge about the relationship of perceived body image with the quality of life (QoL) of women who have undergone surgical treatment for breast cancer. METHODS: A scoping review was conducted following the PRISMA-ScR guidelines. PubMed, PsycINFO and Scopus databases were searched, and articles published until August 2022 were included. RESULTS: The search resulted in 796 records, and 51 articles were included for analysis. A significant negative impact on body image perception and QoL after surgical treatment for breast cancer was found in the majority of studies. Sociodemographic variables such as age, education, socioeconomic status, unstable attachment styles and time after the surgery may have an effect on a worsening of the overall body image and QoL score of women. It was found that there was greater dissatisfaction with body image in women who underwent mastectomy compared to those who underwent conservative surgery. CONCLUSION: Evidence has shown that breast cancer surgery affects the perceived body image and QoL of patients worldwide. Age, education, socioeconomic status, and the type of surgery are potential factors influencing these outcomes. It is worth noting that the review encompassed articles from various countries, reflecting a significant cultural diversity among the studied populations. However, most of these articles did not delve into an analysis of these cultural disparities. This review also indicated insufficient details regarding the assessment instruments used to assess perceived body image.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/cirurgia , Qualidade de Vida , Mastectomia , Imagem Corporal , Escolaridade
2.
J Child Adolesc Ment Health ; 35(1-3): 42-54, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38638062

RESUMO

Objective: The current cross-sectional study aimed to examine the association between childhood trauma, impulsivity, binge eating symptoms, and body mass index (BMI) in a sample of males and females. We also aimed to investigate the indirect association of childhood trauma with binge eating through impulsivity while controlling for BMI.Method: Participants were 410 young adults (mean age = 20.9 years, range 18-24; female = 73.9%) who completed online measures of childhood trauma, impulsivity, binge eating symptoms, and self-reported height and weight. Mediation models were tested using multi-group structural equation modelling.Results: Childhood trauma and impulsivity were associated with an increased risk of binge eating symptoms in females but not males, corroborating previous studies. There was a significant difference in the binge eating symptoms index between sexes, but not regarding the index of childhood trauma and impulsivity. Additionally, adverse childhood experiences were associated with impulsivity and the association of childhood trauma with binge eating was mediated by impulsivity in the female sample.Conclusions: Our results suggest sex-dependent patterns and risk factors that may impact binge eating symptoms. The implications of our results suggest that impulsivity might be a vulnerability factor for binge eating, especially for females.

3.
Am J Med Genet A ; 185(7): 1991-2002, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33765361

RESUMO

Neurotoxic effects caused by high phenylalanine (Phe) in patients with phenylketonuria (PKU) can be avoided through dietary treatment. However, achieving the recommended Phe levels has been a challenge. This study aimed to investigate factors associated with adherence to PKU treatment among patients followed at a medical genetics public service in southern Brazil. Twenty-nine patients (early diagnosed, n = 20; late-diagnosed, n = 9) with classical (n = 16) or mild PKU (n = 13) aged 6-34 years (16.4 ± 7.5) and 16 caregivers were included. Blood Phe levels were recorded, and assessment tools measuring barriers to treatment, IQ, knowledge about disease, treatment, and perceived adherence were collected. Classical PKU patients showed higher current blood Phe levels than mild PKU patients (U = 37.000, p = 0.003). Lifetime and childhood Phe levels were associated with recent metabolic control (τ = 0.76, p = 0.000; τ = 0.70, p = 0.000, respectively). The perception of barriers to treatment was associated with a higher blood Phe level (τ = 0.39, p = 0.003). Tolerance to Phe, metabolic control throughout childhood, and perceived difficulty in living with demands of treatment are important factors of greater vulnerability to poor adherence in PKU patients.


Assuntos
Dieta , Fenilalanina/sangue , Fenilcetonúrias/dietoterapia , Fenilcetonúrias/genética , Adolescente , Brasil/epidemiologia , Criança , Feminino , Humanos , Masculino , Fenilalanina/efeitos adversos , Fenilcetonúrias/sangue , Fenilcetonúrias/patologia , Adulto Jovem
4.
BMC Med Educ ; 20(1): 240, 2020 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-32727430

RESUMO

BACKGROUND: Interpersonal and technical skills are required for the care of people living with substance use disorders. Considering the applicability and usability of online courses as continuing professional education initiatives, this study aimed to describe the content design process of an introductory-level healthcare-centered Massive Open Online Course (MOOC). METHODS: The content of the course was informed through needs assessment, by using three sources: (a) narrative literature review, (b) Delphi health experts panel consensus, and (c) focus groups conducted with people living with substance use disorders. The data from the empirical research phases were analyzed through qualitative Thematic Analysis. RESULTS: The product of this research project is the introductory-level Massive Open Online Course "Healthcare: Developing Relational Skills for the Assistance of People Living with Substance Use Disorders" which approaches health communication and empathetic relational professional skills as a means of reducing stigmatization of people living with substance use disorders. CONCLUSIONS: Diverse strategies for designing distance education initiatives have to consider different views on the subject being approached in such courses. The product presented in this paper has the potential to be an educational tool for topics traditionally not addressed in Brazilian continuing education and can be used as a model to the design of online courses directed to the development of work-related skills for the healthcare professions.


Assuntos
Educação a Distância , Transtornos Relacionados ao Uso de Substâncias , Brasil , Currículo , Pessoal de Saúde/educação , Humanos
5.
AIDS Care ; 31(12): 1509-1517, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-30917676

RESUMO

Studies exploring gender differences in health-related quality of life (HRQOL) of people living with HIV/AIDS (PLWHA) are scarce and contradictory. This study evaluated gender differences in HRQOL of 744 PLWHA with median (IQR) age 44 (37-48) years and HIV infection diagnosed 12 (5-20) years earlier. Results showed important differences between genders (p < .05). Better male physical health was related to being employed, not having economic worries, not receiving psychological support, not having injected drugs in past, low negative mood HIV-related, low HIV illness representation and internalized stigma, and high body image satisfaction and health behavior. For women, variables were fewer years since HIV diagnosis and low enacted stigma-personal experience of rejection. Mentally, variables in men were being employed, not having injected drugs, having a stable partner, high health behavior, use of problem-solving coping, personal autonomy and personal meaning. In women, better mental health was related to high CD4 cells, self-esteem and body image satisfaction, and negative mood HIV-related. Men and women coincided in absence of past opportunistic infections being related to better physical and mental health, and absence of side effects for physical health and low HIV-related stress and HIV illness representation for mental health. Our results highlight the need for detailed study of gender differences that identify the bio-psycho-socio inequalities that affect HRQOL.


Assuntos
Adaptação Psicológica , Ansiedade/psicologia , Imagem Corporal/psicologia , Depressão/psicologia , Infecções por HIV/psicologia , Qualidade de Vida/psicologia , Estigma Social , Adulto , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Nível de Saúde , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Autoimagem , Fatores Sexuais , Espanha/epidemiologia
6.
AIDS Behav ; 20(2): 281-91, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26416782

RESUMO

In Spain little research has focused on assessment of health indicators, both physical and psychological, in people living with HIV. The aim of this study is to evaluate a set of different indicators that allow us to identify psychological factors that may be influencing the quality of life of these people. The sample consist of 744 people infected with HIV aged between from 18 to 82 years (M = 43.04; SD = 9.43). Results show that factors such as self-esteem and leading a healthy lifestyle act as protectors in both, physical and mental health. On the other hand, financial problems, body disfigurement, and depressive mood could have harmful effects on both, physical and mental health. The structural model reveals depressed mood as the factor with greatest influence upon mental health, which in turn can be largely explained by factors such as the stress generated by HIV and personal autonomy. This work has allowed us to identify the vulnerability and protective factors that play a significant role in the physical and mental HRQOL of persons with HIV, providing guidelines for design and implementation of psychological intervention programs aimed to improve HRQOL in this population.


Assuntos
Depressão/psicologia , Infecções por HIV/psicologia , Saúde Mental , Qualidade de Vida/psicologia , Adaptação Psicológica , Adulto , Depressão/etnologia , Feminino , Infecções por HIV/diagnóstico , Infecções por HIV/etnologia , Nível de Saúde , Humanos , Masculino , Transtornos Mentais/etnologia , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Autoimagem , Perfil de Impacto da Doença , Apoio Social , Fatores Socioeconômicos , Espanha/epidemiologia , Inquéritos e Questionários
7.
AIDS Behav ; 20(6): 1360-9, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26584813

RESUMO

The Screenphiv, a screening measure for psychological issues related to HIV, was psychometrically tested in a study involving 744 HIV-infected people in Spain. Participants ages 18-82 (M = 43.04, 72 % men, 28 % women) completed an assessment protocol that included the Screenphiv and the MOS-HIV. A trained interviewer also collected relevant illness-related clinical data and socio-demographics from the participants. A confirmatory factor analysis was used to evaluate the goodness of fit of the Screenphiv's theoretical model and confirmed six first-order factors and two second-order factors [RMSEA (IC 90 %) = 0.07 (0.07-0.08)]. No floor or ceiling effects were observed for the scores. Cronbach's alphas were acceptable for all of the factors (from 0.65 to 0.92). Criterion-related validity also achieved; Screenphiv scores were related to socio-demographic and clinical variables and MOS-HIV summary scores. The Screenphiv is a reliable and valid measure, ready to use in research and clinical settings in Spain.


Assuntos
Infecções por HIV/psicologia , Satisfação Pessoal , Psicometria/instrumentação , Qualidade de Vida , Perfil de Impacto da Doença , Inquéritos e Questionários , Síndrome da Imunodeficiência Adquirida/psicologia , Adaptação Psicológica , Adolescente , Adulto , Idoso , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/métodos , Reprodutibilidade dos Testes , Apoio Social , Espanha , Adulto Jovem
8.
Eur J Haematol ; 94(4): 284-9, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25135593

RESUMO

Patients with haemophilia A (and their physicians) may be reluctant to switch factor VIII (FVIII) concentrates, often due to concerns about increasing the risk of inhibitors; this reluctance to switch may contribute to patients missing the clinical benefits provided by the arrival of new factor VIII products. This topic was explored at the Eleventh Zürich Haemophilia Forum. Clinical scenarios for which product switching may be cause for concern were discussed; when there is a clinical need, there are no absolute contraindications to switching, but some patients (e.g. previously untreated patients and those undergoing elective surgery) may require more careful consideration. Both patient and physician surveys indicate that the reluctance to switch, and the fear of inhibitor development, does not appear to be evidence based. The evaluation of more recent data did not support previous studies suggesting that particular products (e.g. recombinant vs. plasma-derived and full length vs. B-domain modified) may be associated with increased risk. In addition, data from three national product switches showed that switching was not associated with increased inhibitor risk, but highlighted the need for regular inhibitor testing and for a centralised, unbiased database of inhibitor incidence. To conclude, current evidence does not suggest that switching products significantly influences inhibitor development.


Assuntos
Substituição de Medicamentos , Fator VIII/uso terapêutico , Hemofilia A/tratamento farmacológico , Fator VIII/antagonistas & inibidores , Fator VIII/imunologia , Hemofilia A/imunologia , Humanos , Isoanticorpos/imunologia , Proteínas Recombinantes/uso terapêutico , Risco
9.
Eur J Contracept Reprod Health Care ; 19(5): 379-91, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24902040

RESUMO

BACKGROUND: There is no consensus concerning the most effective type of facilitator to promote healthy sexual behaviours in interventions targeting adolescents. OBJECTIVES: To evaluate the facilitator's effect on the implementation of the COMPAS programme (Spanish acronym for Skills for Adolescents with Healthy Sexuality), a school-based HIV prevention protocol. METHODS: Participants were 832 Spanish scholars aged 14 to 18. Fifteen schools were randomly assigned to one of the three following schemes: COMPAS delivered by experts only; the same programme administered by experts and peers; or a control group, not exposed to any intervention. RESULTS: The experts achieved an improvement in HIV knowledge and attitudes towards HIV and condom use; however, experts associated to peers only succeeded in increasing HIV knowledge. The effect size of the changes indicated a greater positive change in the programme when applied by experts than by experts and peers. CONCLUSIONS: The participation of peers as co-facilitators did not increase the efficacy of a programme delivered by experts to Spanish adolescents. Education delivered by experts was the most effective modality for reducing sexual risk. COMPAS is the only Spanish programme targeting the promotion of safer sex behaviours in adolescents whose efficacy has been evaluated with different health agents in Spain.


Assuntos
Infecções por HIV/prevenção & controle , Grupo Associado , Serviços de Saúde Escolar/organização & administração , Adolescente , Atitude Frente a Saúde , Preservativos/estatística & dados numéricos , Feminino , Educação em Saúde/métodos , Educação em Saúde/organização & administração , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Sexo Seguro/estatística & dados numéricos , Adulto Jovem
10.
J Clin Psychol Med Settings ; 21(1): 103-15, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24281770

RESUMO

Low rates of adherence to medical treatments and adverse emotional states are a widespread problem in advanced chronic kidney disease (ACKD). Motivational interviewing using the stages of change model is an effective combination in promoting behavior modifications. The objective of the present study was to determine the effectiveness of an individual, pre-dialysis intervention program (monthly sessions of 90 min over a 6-month period) in terms of adherence, emotional state and health-related quality of life (HRQL). Forty-two patients were evaluated for adherence, depression, anxiety and HRQL with standardized self-report questionnaires. Biochemical markers were also registered. The results show that after the intervention, patients reported significantly higher levels of adherence, lower depression and anxiety levels, and better HRQL (i.e., general health and emotional role domains). Biochemical parameters were controlled significantly better after the intervention, except for iPTH. These findings highlight the potential benefit of applying individual psycho-educational intervention programs based on motivational interviewing and using the stages of change model to promote adherence and wellbeing in ACKD patients.


Assuntos
Nível de Saúde , Saúde Mental/estatística & dados numéricos , Entrevista Motivacional/métodos , Cooperação do Paciente/psicologia , Diálise Renal/psicologia , Insuficiência Renal Crônica/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade , Depressão , Feminino , Seguimentos , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente/estatística & dados numéricos , Satisfação Pessoal , Qualidade de Vida/psicologia , Insuficiência Renal Crônica/terapia , Inquéritos e Questionários , Resultado do Tratamento , Adulto Jovem
11.
Int J Behav Med ; 20(4): 609-17, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22948483

RESUMO

BACKGROUND: Hemophilia experts have recommended that screening tools should be introduced into clinical practice to assess patients' needs and perceptions. PURPOSE: The present work aims to describe the development of a brief instrument for the assessment of subjective well-being of men with hemophilia within an international study involving participants from 10 countries. METHODS: Several steps were implemented toward achieving this objective: (1) literature review; (2) semistructured interviews in different Ibero-American countries; (3) exploratory qualitative content analysis of the interviews; (4) definition of the construct being evaluated; (5) generation of preliminary items; (6) interjudgment ratings of the items, by both patients and experts, to assess comprehension and review items; and (7) psychometric testing of an international sample of 342 patients with hemophilia. RESULTS: Exploratory qualitative study allowed the development of an initial pool of items which address salient life domains related to well-being. Interjudgment ratings led to improvements in the wording and comprehensibilty of the preliminary pool of questions. Psychometric testing allowed items to be reviewed according to empirical criteria. The assessment of the underlying structure of the questionnaire by exploratory factor analysis (generalized least squares) showed a unidimensional model explaining 59.7 % of variance. Adequate internal consistency (0.91) and test-retest reliability (0.82) were observed for the instrument. Associations with other outcome measures and clinical indicators also provided a range of evidence for the instrument's validity. CONCLUSIONS: This study presents a new disease-specific tool which is able to assess subjective well-being in hemophilia patients.The instrument is available in Spanish, Portuguese (Brazilian), and English language versions for use in future research.


Assuntos
Indicadores Básicos de Saúde , Hemofilia A/psicologia , Satisfação Pessoal , Inquéritos e Questionários/normas , Adulto , Idoso , Feminino , Humanos , Idioma , Masculino , Avaliação de Resultados em Cuidados de Saúde , Psicometria/instrumentação , Reprodutibilidade dos Testes
12.
Psychol Health Med ; 18(3): 343-54, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-22985131

RESUMO

Adherence to antiretroviral (ARV) treatment during adolescence and young adulthood is a significant clinical issue for the current management of the HIV/AIDS epidemic in Romania. Understanding patients' own perceptions of their adherence behaviours and related psychological barriers is instrumental for developing robust interventions, and developing psychometrically sound instruments is essential for measuring adherence in this population. We adapted to Romanian an internationally validated questionnaire for the evaluation of ARV treatment adherence. We subsequently conducted a cross-sectional survey to examine its psychometric properties and investigate the relations between self-reported aspects of adherence and established indicators of adherence and health status: Pill count, doctor's assessment of patient's adherence and viral load. Results suggest that low self-reported adherence is particularly associated with experiencing side effects and emotional distress, as well as perceptions of high treatment difficulty and time demands, low self-efficacy, low treatment efficacy and low treatment satisfaction. Perceptions of improvements in health status were overall associated with increased adherence, but feeling good physically sometimes preceded non-adherence behaviours. The questionnaire proved psychometrically sound according to classical test theory criteria (e.g., Cronbach's α = 0.77, significant associations with adherence and health status indicators). Addressing adherence barriers in clinical practice with this population may help reduce their potential impact on behaviours.


Assuntos
Fármacos Anti-HIV/uso terapêutico , Terapia Antirretroviral de Alta Atividade/psicologia , Infecções por HIV/tratamento farmacológico , Sobreviventes de Longo Prazo ao HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos e Questionários/normas , Adolescente , Adulto , Fármacos Anti-HIV/administração & dosagem , Fármacos Anti-HIV/efeitos adversos , Estudos Transversais , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Nível de Saúde , Humanos , Masculino , Adesão à Medicação/psicologia , Adesão à Medicação/estatística & dados numéricos , Psicometria , Sistemas de Alerta , Romênia/epidemiologia , Autoeficácia , Autorrelato , Estatísticas não Paramétricas , Estresse Psicológico/psicologia , Traduções , Adulto Jovem
13.
Pilot Feasibility Stud ; 9(1): 130, 2023 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-37496084

RESUMO

BACKGROUND: Despite the availability of antiretroviral therapy (ART) in many countries, people living with HIV still experience difficulties with treatment. We propose a new smartphone mobile application to assist in adherence to ART. This study aimed to describe this new mobile application's development (content construction and usability), feasibility testing (recruitment, retention rates [attendance], satisfaction) and primary perceived benefits. METHODS: Two consecutive studies were conducted. First, people living with HIV, health care workers and experts in information technology provided feedback to improve the content and usability of the app. After changes in the app were implemented according to the feedback, a second study was performed to assess the feasibility and perceived benefits. Effects on self-reported adherence and perceived well-being were also assessed. RESULTS: Scores of participants (N = 11) showed differences in adherence (effect size .43) and well-being (effect size .45) after using the app. However, the differences did not reach statistical significance. Observing scores individually, six out of 11 participants improved their overall adherence scores, and seven out of 11 participants improved their perceived well-being scores. Recruitment was 95%, and attendance at sessions was 62.5%. In general, the participants were satisfied with the intervention and viewed the app as an informative tool. CONCLUSION: The results are promising and allow us to recommend further studies with the app.

14.
Eur J Haematol ; 88(5): 371-9, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-22260405

RESUMO

For hemophilia patients with inhibitors, immune tolerance induction (ITI) may help to restore clinical response to factor (F) VIII or FIX concentrates. Several ITI regimens and protocols exist; however, despite 30 yr of progressive investigation, the ITI evidence base relies mainly on observational data. Expert opinion, experience, and interpretation of the available evidence are therefore valuable to support clinical decision-making. At the Sixth Zürich Haemophilia Forum, an expert panel considered recent data and consensus to distill key practice points relating to ITI. The panel supported current recommendations that, where feasible, ITI should be offered early to children and adults (ideally ≤ 5 yr of inhibitor detection) when inhibitor titers are <10 Bethesda units (BU) and should be stopped when successful tolerance is achieved. For hemophilia A inhibitor patients, ITI can be founded on recombinant FVIII at high doses. The panel considered that patients with a high bleeding frequency should be offered additional prophylaxis with a bypassing agent. For patients with hemophilia B, there may be a benefit of genetic testing to indicate the risk for inhibitors. ITI is often less effective and associated with a greater risk of side effects in these patients. For high-titer inhibitor (≥ 5 BU) hemophilia B patients, the panel advised that bypassing agents could be offered on demand in addition to ITI. Within future ITI regimens, there may be a role for additional immunosuppressant therapies. Participants agreed that research is needed to find alternatives to ITI therapy that offer durable and sustained effects and reduced rates of complications.


Assuntos
Fator VIII/uso terapêutico , Hemofilia A/tratamento farmacológico , Tolerância Imunológica , Hemofilia A/imunologia , Humanos
15.
AIDS Behav ; 16(8): 2414-23, 2012 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22692820

RESUMO

This study aims to develop an instrument for the assessment of psychological predictors of well-being and quality of life (QoL) in people living with HIV. A four-step procedure was followed to achieve this objective. A literature review, focus group in different regions of Spain and content analysis generated a preliminary pool of 96 items. Interjudgement ratings over the items and a cognitive debriefing interview were performed to delete or review items (one omitted and 15 reviewed). The psychometric properties of the instrument were assessed in a sample of 84 HIV+. Pilot testing allowed a new wave of depuration process by empirical criteria (30 items omitted). A final pool of 63 items covering 23 facets (α from 0.53 to 0.95) of psychological predictors remained. Exploratory factorial analysis (GLS) assessing the underlying structure of the questionnaire showed a six-factor model explaining 56.5 of variance. Empirical exploratory structure revealed evidence of goodness of fit (χ(2) = 113.110, gl = 130, p > 0.05; RMSEA = 0.017; RMSEA IC90 % 0.000-0.057). This study presents the first instrument able to screen key psychological variables expected to be related to adjustment, well-being and QoL in people with HIV.


Assuntos
Infecções por HIV/psicologia , Satisfação Pessoal , Psicometria/instrumentação , Qualidade de Vida , Perfil de Impacto da Doença , Inquéritos e Questionários , Síndrome da Imunodeficiência Adquirida/psicologia , Atividades Cotidianas , Adaptação Psicológica , Análise Fatorial , Feminino , Grupos Focais , Humanos , Masculino , Psicometria/métodos , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Apoio Social , Fatores Socioeconômicos , Espanha
16.
Health Qual Life Outcomes ; 10: 82, 2012 Jul 20.
Artigo em Inglês | MEDLINE | ID: mdl-22817696

RESUMO

BACKGROUND: There is a need for a disease-specific instrument for assessing health-related quality of life in adults with hereditary angioedema due to C1 inhibitor deficiency, a rare, disabling and life-threatening disease. In this paper we report the protocol for the development and validation of a specific questionnaire, with details on the results of the process of item generation, domain selection, and the expert and patient rating phase. METHODS/DESIGN: Semi-structured interviews were completed by 45 patients with hereditary angioedema and 8 experts from 8 regions in Spain. A qualitative content analysis of the responses was carried out. Issues raised by respondents were grouped into categories. Content analysis identified 240 different responses, which were grouped into 10 conceptual domains. Sixty- four items were generated. A total of 8 experts and 16 patients assessed the items for clarity, relevance to the disease, and correct dimension assignment. The preliminary version of the specific health-related quality of life questionnaire for hereditary angioedema (HAE-QoL v 1.1) contained 44 items grouped into 9 domains. DISCUSSION: To the best of our knowledge, this is the first multi-centre research project that aims to develop a specific health-related quality of life questionnaire for adult patients with hereditary angioedema due to C1 inhibitor deficiency. A preliminary version of the specific HAE-QoL questionnaire was obtained. The qualitative analysis of interviews together with the expert and patient rating phase helped to ensure content validity. A pilot study will be performed to assess the psychometric properties of the questionnaire and to decide on the final version.


Assuntos
Angioedemas Hereditários/psicologia , Proteínas Inativadoras do Complemento 1/deficiência , Psicometria/métodos , Qualidade de Vida , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Medicina Baseada em Evidências , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Espanha
17.
Cien Saude Colet ; 25(9): 3635-3646, 2020 Sep.
Artigo em Português | MEDLINE | ID: mdl-32876265

RESUMO

There are indications that burnout syndrome affects primary health care (PHC) professionals. The scope of this study was to investigate the association of empathy and occupational stress with the burnout of PHC professionals. A total of 348 workers filled out an an online assessment including occupational stress, empathy, and burnout scales. The empathetic-concern and perspective-taking empathy dimensions were negatively correlated with burnout (p<.01), while personal anguish was positively related to it (p<.01). The reward and effort occupational stress dimensions revealed greater weight in explaining the job disillusion and psychic exhaustion burnout subscales (p<.001), respectively, while empathetic concern and personal anguish revealed the greatest weight for the explanation of indolence and guilt (p<.001). Reward was the significant predictor of Profile 1 (p=.008), the less severe form of the syndrome, while personal anguish (p=.028) and effort (p=.012) revealed the same weight in the model for Profile 2, namely the most severe level of burnout. The results suggest interventions that focus on both work stressors and the empathy of the professionals involved.


Assuntos
Esgotamento Profissional , Empatia , Satisfação no Emprego , Estresse Ocupacional , Esgotamento Profissional/epidemiologia , Estudos Transversais , Pessoal de Saúde , Humanos , Estresse Ocupacional/epidemiologia , Atenção Primária à Saúde , Estresse Psicológico/epidemiologia , Inquéritos e Questionários
18.
J Patient Rep Outcomes ; 4(1): 29, 2020 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-32358708

RESUMO

BACKGROUND: According to studies of phenylketonuria (PKU), the Brazilian population's metabolic control shows unsatisfactory indexes from childhood. Research on patients' perceived difficulties or barriers to adherence to treatment can help us to comprehend how these outcomes are associated. The present study aimed to: (1) describe the development of an inventory for identifying the most frequent and relevant perceived barriers to PKU treatment from the perspective of patients, caregivers, and healthcare professionals; (2) evaluate certain psychometric characteristics of the new measure; and, (3) explore potential predictors (sociodemographic and medical characteristics) that may contribute to increasing the number of perceived barriers and examine whether the number of barriers is associated with the degree of adherence shown by the patient. RESULTS: Participants in the study were 23 patients with PKU (M age = 18.0 years; SD = 7.3; range 6 to 34 years; 69% early-treated) in classical (n = 11) and mild (n = 12) form, and 11 caregivers. The inventory, developed to ascertain perceived barriers to treatment, was completed by patients (≥ 13 years) and caregivers of patients aged 6 to 17 years. Analyses were conducted to investigate whether barrier inventory scores were associated with adherence to treatment as measured by phenylalanine levels in patients' medical records. Scores on the inventory differed across the patient age groups: adolescents had lower scores (i.e. reported fewer barriers) compared with those of adults (U = 8.000, p = 0.008); patients with better recent metabolic control also reported fewer perceived barriers than did patients with poor adherence (U = 20.000, p = 0.009); and the number of perceived barriers was positively associated with recent blood phenylalanine concentration (Kendall's taub = 0.41; p = 0.001). CONCLUSIONS: These results suggest that the inventory has merit in assessing perceived barriers and support the need for further research on barriers perceived by PKU patients.

19.
Av. psicol. latinoam ; 42(1): 1-14, 20240131.
Artigo em Português | LILACS | ID: biblio-1554968

RESUMO

Este estudio tuvo como objetivo adaptar el Cuestio-nario de Gratitud (gq-6) a la población brasileña. La muestra estuvo constituida por 1 850 participantes con una edad media de 25.13 años (dt = 5.36), 50 % mujeres y 50 % hombres, con representación de todos los estados brasileños. Se realizó análisis factorial exploratorio (afe) y análisis factorial confirmatorio (afc), y correlaciones entre gratitud (gq-6) y satisfac-ción con la vida (swls), optimismo (lot-r), esperanza (ahs), felicidad (shs), afectos positivos y negativos (panas), y personalidad (bfi). Los resultados de efay cfa indicaron una solución unidimensional con los elementos que soportan cargas (λ > 0.39) en el factor y un ajuste aceptable para la solución de un factor (χ2(9) = 59, p < 0.001; cfi= 0.956, rmsea= 0.078). Las correlaciones indican una asociación con variables externas relevantes. Se concluye que el cuestionario presenta evidencia de validez y confiabilidad para su uso en investigación en el contexto brasileño


This study aimed to evaluate the psychometric properties of the Gratitude Questionnaire (gq-6) to the Brazilian population. The sample consisted of 1 850 participants with a mean age of 25.13 years (sd = 5.36), 50 % female and 50 % male and the sample represents all Brazilian states. Exploratory factor analysis (efa) and confirmato-ry factor analysis (cfa) were run, along with correlations between gratitude (gq-6) and life satisfaction (swls), optimism (lot-r), hope (ahs), happiness (shs), positive and negative affects (panas), and personality (bfi). The efa and cfa results indicated a one-dimensional solu-tion with the items loading satisfactorily (λ > 0.39) in the factor and acceptable fit for the one-factor solution (χ2 (9) = 59, p < 0.001; cfi= 0.956, rmsea= 0.078). Correlations indicate relevant relationships with exter-nal variables. In conclusion, the questionnaire shows evidence of validity and reliability for research use in the Brazilian context


Este estudo investigou as propriedades psicométricas do Questionário de Gratidão (gq-6) na população bra-sileira. Participaram 1 850 respondentes com média de idade de 25.13 anos (dp= 5.36), sendo 50 % do sexo feminino e 50 % do sexo masculino e com representação de todos os estados brasileiros. Foram rodadas análi-ses fatoriais exploratória (efa) e fatorial confirmatória (cfa), e correlações entre gratidão (gq-6) e satisfação com a vida (swls), otimismo (lo-r), esperança (ahs), felicidade subjetiva (shs), afetos positivos e negativos (panas) e personalidade (bfi). Os resultados da efa e da cfa indicaram uma solução unidimensional com os itens carregando com cargas adequadas (λ > 0.39) no fator e ajuste aceitável para a solução unifatorial (χ2 (9) = 59, p < 0.001; cfi= 0.956, rmsea = 0.078). As correlações indicaram relações com variáveis externas relevantes. Conclui-se que a escala apresenta evidências de validade e fidedignidade para uso em pesquisa no Brasil.


Assuntos
Humanos
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