Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group
Autor(a) principal: | |
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Data de Publicação: | 2018 |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://doi.org/10.29021/spdv.76.4.975 |
Resumo: | Introduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities. |
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Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus GroupDermatite Atópica: Perspetivas e Atitudes de Doentes Adultos e de Cuidadores de Crianças Afetadas, Avaliadas por Focus GroupCalcineurin InhibitorsChildDermatitisAtopicFocus GroupsQuality of LifeCriançaDermatite AtópicaGrupos de DiscussãoInibidores da CalcineurinaQualidade de VidaIntroduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities.Introdução: Dimensões importantes, tais como experiências pessoais, atitudes em relação à doença, suas causas e tratamentos, não são totalmente abordadas em ensaios clínicos. Os Focus Group (FG) surgiram como uma ferramenta interessante e valiosa na pesquisa clínica, complementando essa lacuna. O objetivo desta pesquisa qualitativa foi avaliar, tanto em cuidadores quanto em doentes adultos que lidam com dermatite atópica (DA), as suas atitudes, experiências pessoais e perspetivas em relação à doença e ao seu tratamento tópico, bem como o impacto na qualidade de vida (QV).Material e Métodos: Para as sessões de discussão foram recrutados 10 cuidadores e 10 doentes adultos. Foram realizadas duas sessões de FG e discutidos três temas principais: perspetivas em relação à DA, tratamentos tópicos e o impacto da doença na QV. Todas as atividades foram gravadas em vídeo e a discussão e anotações foram transcritas para um documento. A análise posterior foi realizada por dois investigadores.Resultados: No momento do diagnóstico, os sentimentos vivenciados que melhor o descrevem foram “preocupação” (30%) para os cuidadores e “qualidade de vida” (30%) para os doentes. A emoção ou estado de espírito "positivo" em relação à doença atual foi "superação" para os cuidadores (21%) e "controlo" para os doentes (17%). A principal emoção “negativa ou neutra” foi “medo” para os cuidadores (13%) e “resignação” para os doentes (18%), mas ao projetar para a criança doente ao seu cuidado, “frustração” (19%) foi a mais citada pelos cuidadores. Em relação aos tratamentos tópicos, a satisfação global média dos cuidadores foi alta (8,5/10) para o tacrolimus, exceto no item “preço”. No caso dos doentes, os corticosteroides receberam uma melhor pontuação (8,0/10), com a exceção do item “tolerabilidade/efeitos adversos”. Características como “tratamento preventivo com redução das agudizações” e “livre de cortisona” foram importantes para ambos. Todos os participantes demonstraram altos níveis de impacto negativo na QV, tendo respetivamente 47% e 64,6% considerado os scores de interferência “bastante” e “muito”.Conclusão: Estudos qualitativos na DA pela metodologia FG são escassos e, do nosso conhecimento, este é o primeiro a reunir doentes adultos e cuidadores de crianças. As dimensões obtidas por esta abordagem poderão se úteis para complementar os dados dos ensaios clínicos e orientar decisões de investigadores e autoridades de saúde.Sociedade Portuguesa de Dermatologia e Venereologia2018-12-27T00:00:00Zjournal articleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://doi.org/10.29021/spdv.76.4.975oai:ojs.revista.spdv.com.pt:article/975Journal of the Portuguese Society of Dermatology and Venereology; Vol 76 No 4 (2018): October - December; 399-408Revista da Sociedade Portuguesa de Dermatologia e Venereologia; v. 76 n. 4 (2018): Outubro - Dezembro; 399-4082182-24092182-2395reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPenghttps://revista.spdv.com.pt/index.php/spdv/article/view/975https://doi.org/10.29021/spdv.76.4.975https://revista.spdv.com.pt/index.php/spdv/article/view/975/600Mota, Albertoinfo:eu-repo/semantics/openAccess2022-10-06T12:35:09Zoai:ojs.revista.spdv.com.pt:article/975Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T16:11:08.306672Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group Dermatite Atópica: Perspetivas e Atitudes de Doentes Adultos e de Cuidadores de Crianças Afetadas, Avaliadas por Focus Group |
title |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
spellingShingle |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group Mota, Alberto Calcineurin Inhibitors Child Dermatitis Atopic Focus Groups Quality of Life Criança Dermatite Atópica Grupos de Discussão Inibidores da Calcineurina Qualidade de Vida |
title_short |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
title_full |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
title_fullStr |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
title_full_unstemmed |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
title_sort |
Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group |
author |
Mota, Alberto |
author_facet |
Mota, Alberto |
author_role |
author |
dc.contributor.author.fl_str_mv |
Mota, Alberto |
dc.subject.por.fl_str_mv |
Calcineurin Inhibitors Child Dermatitis Atopic Focus Groups Quality of Life Criança Dermatite Atópica Grupos de Discussão Inibidores da Calcineurina Qualidade de Vida |
topic |
Calcineurin Inhibitors Child Dermatitis Atopic Focus Groups Quality of Life Criança Dermatite Atópica Grupos de Discussão Inibidores da Calcineurina Qualidade de Vida |
description |
Introduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities. |
publishDate |
2018 |
dc.date.none.fl_str_mv |
2018-12-27T00:00:00Z |
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journal article info:eu-repo/semantics/article |
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info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://doi.org/10.29021/spdv.76.4.975 oai:ojs.revista.spdv.com.pt:article/975 |
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https://doi.org/10.29021/spdv.76.4.975 |
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oai:ojs.revista.spdv.com.pt:article/975 |
dc.language.iso.fl_str_mv |
eng |
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eng |
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https://revista.spdv.com.pt/index.php/spdv/article/view/975 https://doi.org/10.29021/spdv.76.4.975 https://revista.spdv.com.pt/index.php/spdv/article/view/975/600 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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Sociedade Portuguesa de Dermatologia e Venereologia |
publisher.none.fl_str_mv |
Sociedade Portuguesa de Dermatologia e Venereologia |
dc.source.none.fl_str_mv |
Journal of the Portuguese Society of Dermatology and Venereology; Vol 76 No 4 (2018): October - December; 399-408 Revista da Sociedade Portuguesa de Dermatologia e Venereologia; v. 76 n. 4 (2018): Outubro - Dezembro; 399-408 2182-2409 2182-2395 reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
reponame_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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