Approaches to Craniofacial-Specific Quality of Life Assessment in Adolescents

2005 ◽  
Vol 42 (1) ◽  
pp. 19-24 ◽  
Author(s):  
Todd C. Edwards ◽  
Donald L. Patrick ◽  
Tari D. Topolski ◽  
Cassandra L. Aspinall ◽  
Wendy E. Mouradian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adult ◽  
Focus Group ◽  
Qualitative Methodology ◽  
Medical Center ◽  
Life Assessment ◽  
Psychometric Validation ◽  
Life Instrument ◽  
Depth Interviews

Objective To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module. Design Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs. Setting The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington. Patients, Participants Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field. Results Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument–Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument– Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery. Conclusions Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.

Quality of life assessment in patients with nonmelanoma skin cancer - psychometric validation of the EORTC QLQ-C30 questionnaire

2017 ◽  
Vol 15 (11) ◽  
pp. 1090-1100 ◽  
Author(s):  
Karolina Müller ◽  
Sigrid Karrer ◽  
Rolf-Markus Szeimies ◽  
Julia Steinbauer ◽  
Elisabeth Kohl ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Skin Cancer ◽  
Nonmelanoma Skin Cancer ◽  
Life Assessment ◽  
Psychometric Validation ◽  
Quality Of Life Assessment ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

scholarly journals Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

2019 ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Emotional Support ◽  
Qualitative Methodology ◽  
Neurological Diseases ◽  
Open Communication ◽  
Depth Interviews ◽  
The Way

Abstract Background Progressive neurological diseases, such as multiple sclerosis, Parkinson's disease, Huntington's disease, significantly interfere with patients' lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients' health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases.Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding.Results It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome.Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

scholarly journals Direitos Humanos e Superlotação no Presídio Feminino de porto Alegre / Human Rights and Overcrowding in the Women’s Prison in Porto Alegre

2016 ◽  
Author(s):  
Dani Rudnicki ◽  
Marili Antunes Neubüser
Keyword(s):  
Quality Of Life ◽  
Human Rights ◽  
Focus Group ◽  
Empirical Study ◽  
Interpersonal Relationships ◽  
Qualitative Methodology ◽  
Porto Alegre ◽  
Daily Lives ◽  
Women's Prison

Resumo: Buscamos determinar, neste artigo, como vivem as mulheres obrigadas a cumprir pena restritiva de liberdade ou a trabalhar na Penitenciária Feminina Madre Pelletier. Essa pesquisa qualitativa utilizou, para tanto, metodologia baseada no estudo empírico da realidade prisional; os dados foram obtidos em 2015, com a realização de um grupo focal com cinco apenadas e a aplicação de questionário a 14 agentes penitenciárias, além da coleta de impressões em outras pesquisas dos autores, bem como na experiência de um dos pesquisadores, que trabalha há mais de cinco anos no local. Além disso, utilizamos como fonte, entre outros, registros em livros da instituição e bibliografia pertinente. Concluímos que, com o fim da superlotação, em 2012, a qualidade de vida melhorou para ambos os grupos. Isso porque na época da superlotação carcerária as relações interpessoais entre presas aconteciam com mais violência (provocada por lideranças que impunham regras). Logo, ainda que o sistema prisional continue a violar direitos humanos das presas, hoje mais direitos são respeitados do que quando existia superlotação.Palavras-chave: Direitos humanos; Criminologia; Prisões; Penitenciária feminina Madre Pelletier; Superlotação. Abstract: We seek to recognize, in this paper, the conditions of the daily lives of women who have received prison sentences and those who work in the Women's Penitentiary Madre Pelletier. Therefore, this research uses a qualitative methodology based on an empirical study of the prison’s reality; data were obtained in 2015, with the use of a focus group with five prisoners and questionnaire to 14 prison officers, as well as collection of prints in other studies and the experience of one of the researchers, who has been working there for more than five years. In addition, we use as a source, among others, records in the institution’s books and relevant bibliography. We conclude that, with the end of overcrowding in 2012, the quality of life improved in both groups. Before, interpersonal relationships between inmates happened with more violence (caused by leaders who imposed rules). Thus, even though the prison system continues to violate human rights of the arrested, more rights are respected today than when there was overcrowding.Keywords: Human rights; Criminology; Prisons; Madre Pelletier Women’s Prison; Overcrowding.

scholarly journals Low vision quality of life assessment: Psychometric validation of Portuguese version of NEI-VFQ 25

2005 ◽  
Vol 1282 ◽  
pp. 729-731
Author(s):  
Luisa S. Silva ◽  
L.N. Ferraz Oliveira ◽  
P. Lopes Ferreira ◽  
L. Moniz Pereira
Keyword(s):  
Quality Of Life ◽  
Low Vision ◽  
Life Assessment ◽  
Psychometric Validation ◽  
Quality Of Life Assessment ◽  
Portuguese Version

scholarly journals Dynamics of quality of life in orthopedic patients during an outpatient physical therapy program

2020 ◽  
pp. 175-182
Author(s):  
S. Fedorenko ◽  
О. Lazarieva ◽  
V. Vitomskyi ◽  
M. Vitomska
Keyword(s):  
Quality Of Life ◽  
Physical Therapy ◽  
Medical Center ◽  
Life Assessment ◽  
International Classification Of Functioning ◽  
Therapy Program ◽  
Quality Of Life Indicators ◽  
The Individual ◽  
Orthopedic Patients

Quality of life indicators are key in assessing the effectiveness of physical therapy now, as they reflect the physical, psychological and social functioning of the individual. Objective: to determine the dynamics of quality of life in outpatients with disorders of orthopedic profile during a course of physical therapy, depending on the type of attitude to the disease. Research methods: quality of life assessment was conducted using the internationally standardized Health Status Survey. Patient grouping was performed using the International Classification of Functioning and the method of determining types of attitudes to the disease. The obtained results were processed by methods of mathematical statistics. The study involved 113 patients who underwent a course of physical therapy at FESCO Medical Center during 2013-2015. Results. The analysis revealed a number of features of the dynamics of quality of life depending on the localization of damage to the musculoskeletal system and the type of attitude to the disease. In particular, among lower-impaired patients group with irrational attitude to the disease had worse dynamics in the scales “physical functioning”, “role limitations due to physical health”, “pain”, “vitality”, “mental health” and "physical status". Because the dynamics in the groups with irrational attitude to the disease were statistically worse in a significant number of indicators, no comparison of the final indicators with the groups of patients with the rational attitude to the disease was observed. Conclusion. The existence of statistically significant differences in the dynamics of quality of life among patients with orthopedic profile during physical therapy at the outpatient stage was confirmed, depending on the type of attitude to the disease. The results obtained should be considered to improve the physical therapy system and increase its effectiveness. This is necessary first of all for patients with irrational attitude to the disease, as a significant number of the studied indicators were worse in these patients, and also had less pronounced dynamics compared to patients with rational psychotypes. This requires identifying the characteristics of managing such patients and improving management in the physical therapy system.

scholarly journals Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

BMC Neurology ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Emotional Support ◽  
Qualitative Methodology ◽  
Neurological Diseases ◽  
Open Communication ◽  
Depth Interviews ◽  
The Way

Abstract Background Progressive neurological diseases, such as multiple sclerosis, Parkinson’s disease, Huntington’s disease, significantly interfere with patients’ lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients’ health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases. Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding. Results It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome. Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

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