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1.
J Headache Pain ; 24(1): 127, 2023 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-37718449

RESUMO

BACKGROUND: Headaches are the most common complaints among pediatric populations. Determining the cause and appropriate treatment for headaches may be challenging and costly, and the impact of headaches on the lives of patients and their families is not well understood. OBJECTIVE: A systematic literature review was conducted to examine what PROMs are currently used, and to identify quality of life (QoL) concepts important to children suffering from headaches and any known determinants of QoL. METHODS: Embase, Medline, Web of Science, CINAHL, EBSCOhost, PsychINFO, Cochrane CENTRAL and Google Scholar were searched from their inception through to June 2021. Studies investigating QoL, using a validated outcome measure in pediatric patients with headaches, were included. Relevant studies were identified through title and abstract screening and full text review by two independent reviewers. A citation review of included studies was performed. QoL concepts were extracted from the outcome measures that were used in each study to develop a preliminary conceptual model of QoL in children suffering from headaches. Determinants of QoL were also identified and categorized. RESULTS: A total of 5421 studies were identified in the search. Title and abstract screening resulted in the exclusion of 5006 studies. Among the 415 studies included for full text review, 56 were eligible for final analysis. A citation review resulted in the addition of five studies. Most studies were conducted in high-income countries and included a patient-sample accordingly (n = 45 studies). Sixteen different PROMs were identified in the included studies, of which the PedsQL was used the most often (n = 38 studies). The most common health concepts reported were physical functioning (n = 113 items), social and psychological wellbeing (N = 117, n = 91 resp.). Twenty-five unique determinants of QoL were extracted from the included studies. CONCLUSION: There is a need for a condition-specific PROM to facilitate the measurement of QoL outcomes in the pediatric headache population. A conceptual model was developed based on the findings from the health concepts. Findings from this review could be used for future qualitative interviews with pediatric patients with headaches to elicit and refine important QoL concepts.


Assuntos
Ansiedade , Qualidade de Vida , Humanos , Criança , Cefaleia
2.
Cleft Palate Craniofac J ; 60(4): 413-420, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-34904896

RESUMO

The aim of this study was to examine internal responsiveness and estimate minimally important differences (MIDs) for CLEFT-Q scales.In this prospective cohort study, participants completed the CLEFT-Q appearance and health-related quality of life (HRQL) scales before and six months after cleft-related surgery.Seven cleft centres in Canada, USA and UK participated.Patients were ages 8-29 years with CL/P.Patients underwent rhinoplasty, orthognathic or cleft lip scar revision surgery.Internal responsiveness was examined using Cohen's d effect sizes (ESs) based on the following interpretation: 0.20-0.49 small, 0.50-0.79 moderate and ≥ 0.80 large. MIDs were estimated using two distribution-based approaches.Participants had a rhinoplasty (n = 31), orthognathic (n = 21) or cleft lip scar revision (n = 18) surgery. Most participants were males (56%) and aged 8-11 years (41%). Following rhinoplasty, ESs were larger for the nose (0.92, p = 0.001) and nostrils (0.94, p < 0.001) scales than for the face scale (0.51, p = 0.003). MIDs ranged between 6.2-10.4. For orthognathic surgery, larger ES was observed for the jaws scale (1.80, p < 0.001) compared with the teeth (1.16, p < 0.001), face (1.15, p = 0.001) and lips (0.94, p < 0.001) scales. MIDs ranged between 5.9-14.4. In the cleft lip scar revision sample, the largest ES was observed for the nose scale (0.76, p = 0.03), followed by lips (0.58, p = 0.009) and cleft lip scar (0.50, p = 0.043) scales. MIDs ranged between 6.4-12.3.CLEFT-Q detected change in key outcomes for three cleft-specific surgeries, providing evidence of its responsiveness. Estimated MIDs will aid in interpreting this PROM.


Assuntos
Fenda Labial , Masculino , Humanos , Feminino , Fenda Labial/cirurgia , Estudos Prospectivos , Qualidade de Vida , Cicatriz , Lábio
3.
Ophthalmologie ; 119(7): 675-685, 2022 Jul.
Artigo em Alemão | MEDLINE | ID: mdl-35925411

RESUMO

BACKGROUND: The classification of intraocular lymphomas is based on their anatomical location. They are divided into uveal lymphomas with involvement of the choroid, ciliary body or iris and vitreoretinal lymphomas with isolated or combined involvement of the vitreous body and/or retina. Over the last decades it has become increasingly possible to work out the clinical and pathobiological features of the various subtypes, thereby reducing the diagnostic hurdles and creating improved treatment options. OBJECTIVE: A summary of the various types of intraocular lymphoma in terms of clinical features, diagnostics, treatment and prognosis is given as well as recommendations for follow-up care. METHODS: A selective literature search was carried out on the subject of intraocular lymphomas using PubMed and Google Scholar. RESULTS: Intraocular lymphomas affect different structures, so that the symptoms can also be very different. The diagnostic spectrum ranges from typical ocular examination methods to sample biopsies with subsequent cytological, histological and molecular pathological processing. The treatment pillars available are percutaneous irradiation and intravitreal drug administration as local treatment and systemic treatment or a combination of systemic and local treatment. The prognosis depends mainly on the subtype of the lymphoma and the extent of the infestation when the diagnosis is confirmed. Even though some effective treatment options are now available, it has not yet been possible to significantly reduce the mortality rate. CONCLUSION: Many different options are available for the diagnostics and treatment of intraocular lymphomas, which require close interdisciplinary cooperation. The further developments in the field of molecular pathology allow a faster and more accurate diagnosis and could open up new treatment options in the future.


Assuntos
Neoplasias Oculares , Linfoma Intraocular , Linfoma , Neoplasias Oculares/diagnóstico , Humanos , Linfoma Intraocular/diagnóstico , Linfoma/diagnóstico , Prognóstico , Corpo Vítreo/química
4.
Curr Oncol ; 27(2): 90-99, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32489251

RESUMO

Background: Patient-reported outcomes (pros) are essential to capture the patient's perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting. Methods: The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14-15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice. Results: The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections covering 4 theme areas: Patient and Families, Health Policy, Clinical Implementation, and Research. The patient voice perfectly mirrors the recommendations that the experts reached by consensus and provides an overriding impetus for the use of pros in health care. Conclusions: Although our vision of pros transforming the health care system to be more patient-centred is still aspirational, the Position Statement presented here takes a first step toward providing recommendations in key areas to align Canadian efforts. The Position Statement is directed toward a health policy audience; future iterations will target other audiences, including researchers, clinicians, and patients. Our intent is that future versions will broaden the focus to include chronic diseases beyond cancer.


Assuntos
Atenção à Saúde/estatística & dados numéricos , Oncologia/estatística & dados numéricos , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Assistência Centrada no Paciente/estatística & dados numéricos , Canadá , Atenção à Saúde/métodos , Atenção à Saúde/normas , Humanos , Oncologia/métodos , Oncologia/normas , Neoplasias/diagnóstico , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/normas , Qualidade de Vida
5.
Br J Dermatol ; 181(6): 1207-1215, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-30977918

RESUMO

BACKGROUND: Psychosocial concerns represent important outcomes in studies of treatments for acne and acne scarring. Also important, but largely overlooked, is the concept of appearance. OBJECTIVES: To design an acne-specific patient-reported outcome measure for acne and acne scarring. METHODS: We used a mixed-methods approach. Phase I involved 21 patient interviews that were audio-recorded, transcribed and coded. Concepts were identified and developed into scales that were refined through 10 cognitive interviews and input from 16 clinical experts. Phase II involved data collection at hospital and community-based dermatology clinics in Canada and the U.S.A. Eligible participants were aged 12 years and older with acne and/or acne scars on the face, chest and/or back. Rasch Measurement Theory (RMT) analyses were performed to examine psychometric properties. RESULTS: Phase I led to the development of seven scales that measure appearance of facial skin, acne (face, chest and back) and acne scars, acne-specific symptoms and appearance-related distress. In phase II, 256 patients completed the ACNE-Q. RMT analysis provided evidence that the items of each scale worked together conceptually and statistically. Most participants scored within the range of measurement for each scale (81·9-93·1%). Reliability was high, with person separation index values and Cronbach alpha values > 0·90 for the appearance scales, ≥ 0·87 for appearance-related distress and ≥ 0·75 for symptoms. Worse scores on appearance scales correlated with worse symptom scores and more appearance-related distress. CONCLUSIONS: The ACNE-Q is a rigorously developed instrument that can be used to measure appearance and other patient-centred concerns. What's already known about this topic? Acne is a common dermatological condition that can have an important impact on psychosocial function. Current patient-reported outcome measures specific to acne focus mostly on measuring psychological and social impact. What does this study add? The ACNE-Q provides a set of independently functioning scales that measure appearance of facial, back and chest acne, acne scarring and facial skin. Additional scales measure appearance-related distress and acne symptoms. What are the clinical implications of this work? ACNE-Q provides the dermatology community with a rigorously developed patient-reported measure for acne that can be applied in clinical trials, research and patient care. The measurement of appearance by ACNE-Q scales is more comprehensive than in other instruments providing important information on appearance of their acne and/or acne scars from the patient perspective.


Assuntos
Acne Vulgar/terapia , Cicatriz/terapia , Estética/psicologia , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Acne Vulgar/complicações , Acne Vulgar/diagnóstico , Acne Vulgar/psicologia , Adolescente , Adulto , Cicatriz/diagnóstico , Cicatriz/etiologia , Cicatriz/psicologia , Face , Estudos de Viabilidade , Feminino , Humanos , Masculino , Satisfação do Paciente , Pesquisa Qualitativa , Qualidade de Vida , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Resultado do Tratamento , Adulto Jovem
7.
Br J Dermatol ; 179(1): 88-94, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29654700

RESUMO

BACKGROUND: The patient's perspective of their facial scar after skin cancer surgery influences perception of care and quality of life (QoL). Appearance satisfaction after surgery is also an important but often overlooked treatment outcome. OBJECTIVES: To report the psychometric validation of the FACE-Q Skin Cancer Module consisting of five scales, measuring appearance satisfaction (Satisfaction with Facial Appearance, Appraisal of Scars), QoL (Cancer Worry, Appearance-related Psychosocial Distress) and the patient experience (Satisfaction with Information: Appearance). METHODS: Participants underwent Mohs surgery for facial basal or squamous cell carcinoma or excision of early facial melanoma. Cohort 1 received a set of scales before and after surgery. Cohort 2 received the scales on two occasions in the postoperative period for test-retest reliability. Rasch measurement theory was used to select (item-reduce) the most clinically meaningful items for the scales. Reliability, validity, floor and ceiling effects and responsiveness were also analysed. RESULTS: Of 334 patients, 209 (response rate 62·6%) were included. Rasch analysis reduced the total scale items from 77 to 41. All items had ordered thresholds and good psychometric fit. Reliability was high (Person separation index and Cronbach's α ≥ 0·90) and scales measuring similar constructs were correlated. High floor and ceiling effects were seen for the scales. The Cancer Worry scale demonstrated responsiveness (P = 0·004). CONCLUSIONS: The FACE-Q Skin Cancer Module meet the requirements of the Rasch model providing linearized measurement. Discriminating between patients with minimal appearance or worry impairment may be a limitation. The scales can be used for larger validation studies, clinical practice and research.


Assuntos
Carcinoma Basocelular/cirurgia , Neoplasias Faciais/cirurgia , Qualidade de Vida/psicologia , Neoplasias Cutâneas/cirurgia , Carcinoma de Células Escamosas de Cabeça e Pescoço/cirurgia , Adulto , Idoso , Idoso de 80 Anos ou mais , Carcinoma Basocelular/psicologia , Neoplasias Faciais/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cirurgia de Mohs , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Psicometria , Neoplasias Cutâneas/psicologia , Carcinoma de Células Escamosas de Cabeça e Pescoço/psicologia , Inquéritos e Questionários
8.
J Pediatr Urol ; 13(1): 19-27, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28089292

RESUMO

BACKGROUND: Patient-reported outcomes have the potential to provide invaluable information for evaluation of hypospadias patients, aid in decision-making, performance assessment, and improvement in quality of care. To appropriately measure patient-relevant outcomes, well-developed and validated patient-reported outcome (PRO) instruments are essential. OBJECTIVE: To identify and evaluate existing PRO instruments designed to measure quality of life and/or satisfaction of individuals with hypospadias that have been developed and validated in a hypospadias population. METHODS: A systematic search of MEDLINE, EMBASE, PsycINFO, CINAHL and Health and Psychosocial Instruments was conducted in April 2016. Two reviewers independently assessed studies and identified PRO instruments for inclusion. Data were extracted on study characteristics, instrument development and validation, and content domains. RESULTS: A total of 32 studies were included that used or described five PRO instruments: Hypospadias Objective Scoring Evaluation (HOSE), Pediatric Penile Perception Score (PPPS), Penile Perception Score (PPS), Genital Perception Scale (GPS) for adults, and GPS for children/adolescents. Instrument development and validation was limited. The majority of identified instruments focused on postoperative cosmetic satisfaction, with only one instrument considering urinary function, and no instruments evaluating sexual function and psychosocial sequelae. CONCLUSIONS: While many hypospadias studies have acknowledged the necessity of a patient-reported element, few have used validated PRO instruments developed in a hypospadias population. Existing instruments to measure patient-reported outcomes in hypospadias require improvement in both the breadth of content and in their development and validation methodology.


Assuntos
Hipospadia/psicologia , Avaliação de Resultados da Assistência ao Paciente , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Qualidade de Vida , Tomada de Decisões , Humanos , Masculino , Psicometria
9.
Child Care Health Dev ; 41(4): 547-58, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25351414

RESUMO

AIM: To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years. BACKGROUND: There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care. METHODS: Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at McMaster Children's Hospital (Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION-Q. Rasch measurement theory (RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted. RESULTS: The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION-Q scores than did participants who disagreed. CONCLUSIONS: The TRANSITION-Q is a short, clinically meaningful and psychometrically sound scale. This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition.


Assuntos
Doença Crônica/terapia , Continuidade da Assistência ao Paciente , Autocuidado , Inquéritos e Questionários , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Ontário , Psicometria , Reprodutibilidade dos Testes
10.
Child Care Health Dev ; 40(5): 723-30, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24117679

RESUMO

BACKGROUND: Despite literature supporting a client and family-centred approach to healthcare delivery in paediatric facilities, there is little information about healthcare delivery from the perspective of teenagers in the oncology setting. The objective of this study is to describe the healthcare experiences of teenagers with cancer. METHODS: As part of a larger study on teen-centred care delivery in paediatric oncology, a survey included several open-ended questions to learn about the following: (1) what teenagers liked about the cancer care they received; (2) what they disliked about the cancer care received; and (3) what they would include if they could design the perfect cancer centre for teenagers. The survey was completed by 200 teenagers (aged 12-20 years) from three paediatric hospitals in Canada. Answers to these questions were coded and developed into themes and subthemes using a thematic analysis approach. RESULTS: The number of patients providing answers was 89% for question 1, 63% for question 2 and 68.5% for question 3. Likes and dislikes were conceptualized in terms of four key themes as follows: (1) staff at the treatment centre; (2) the cancer care they received; (3) the treatment centre itself; and (4) social activities. The most common suggestions for the perfect cancer centre included having access to better entertainment, more social opportunities to interact with peers, and a more comfortable environment for themselves and their families. CONCLUSION: Understanding teenagers' experiences in the paediatric oncology setting provides information that could be used to shape the delivery of healthcare in a way that is tailored to their needs. Further research in this area is required in order to improve existing oncology care.


Assuntos
Neoplasias/terapia , Pediatria , Sobreviventes/psicologia , Adolescente , Atitude do Pessoal de Saúde , Canadá , Criança , Estudos de Coortes , Coleta de Dados , Atenção à Saúde , Feminino , Humanos , Masculino , Satisfação do Paciente , Adulto Jovem
11.
Child Care Health Dev ; 40(2): 184-94, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23121336

RESUMO

BACKGROUND: Single parents whose children have cancer are a marginalized group who report less family centred care, and therefore, less quality cancer care for their children. As such, the aims of this study were to explore how single parents of children with cancer describe their caregiving experiences and to understand their contextual life stressors. METHODS: A constructivist grounded theory method was used. Qualitative interviews with 29 single parents of children with cancer who were at least 6 months post-diagnosis were recruited between November 2009 and April 2011 from four hospitals across Canada. Line-by-line coding was used to establish codes and themes and constant comparison was used to establish relationships among emerging codes and conceptual themes. RESULTS: The first set of findings report on caregiving duties including: emotional tasks, informational tasks and physical tasks. The second set of findings report on the contextual picture of parent's lives including their living conditions, their physical and mental health and their family histories of disruption, trauma and disease. CONCLUSIONS: Single parents caring for children with cancer were found to experience several cumulative stressors in addition to the current strain of caring for a child with cancer. The synergy of these cumulative stresses with the added strain of caregiving for a child with cancer may have long-term health and financial implications for parents. Broad-based policy interventions should focus on relieving the chronic strains associated with being a single parent of a child with cancer.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Crianças com Deficiência , Neoplasias , Pais Solteiros , Estresse Psicológico , Adolescente , Canadá , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Emoções , Feminino , Habitação , Humanos , Lactente , Masculino , Saúde Mental , Neoplasias/economia , Neoplasias/mortalidade , Neoplasias/psicologia , Relações Pais-Filho , Formulação de Políticas , Relações Profissional-Paciente , Pesquisa Qualitativa , Qualidade de Vida , Pais Solteiros/psicologia , Apoio Social , Fatores Socioeconômicos , Inquéritos e Questionários
12.
Child Care Health Dev ; 39(4): 562-80, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-22515477

RESUMO

The quality of life (QOL) of children with developmental coordination disorder (DCD) is largely unknown, but evidence suggests that multiple QOL domains are affected by the disorder. While DCD is primarily considered a motor disorder, multiple studies have reported psychological and social concerns in children with this condition. Our primary aim was to present the current state of the evidence regarding the physical, psychological, and social QOL domains that can be affected in children with DCD. Systematic review of articles from seven databases through November 2010 (MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, CDSR, DARE) was conducted. Search terms included developmental coordination disorder, dyspraxia, quality of life, life satisfaction, well-being, activities of daily living, and participation. Two independent reviewers screened titles, abstracts, and full-text articles. Studies meeting the following criteria were selected: (1) sample comprised solely of individuals with coordination difficulties consistent with DCD; (2) outcome measures related to physical, psychological, or socials domains of QOL; and (3) articles published in English. Data were extracted by one author and verified by a second. Outcomes were categorized according to physical, psychological and social domains of QOL and study quality was rated by case definitions of DCD based on diagnostic criteria as per the Diagnostic and Statistical Manual - 4th edition. Forty-one articles were included. Most studies reported significantly poorer results in physical, psychological and social functioning in children with DCD compared with peers. Despite the impact of DCD on multiple domains, only one study used a QOL measure as an outcome. Although DCD impacts several QOL domains, the QOL of children with this disorder remains largely unknown. The next critical step is for clinicians and researchers to use QOL measures to gather information on how DCD may affect the QOL of children with this disorder.


Assuntos
Transtornos das Habilidades Motoras/psicologia , Qualidade de Vida/psicologia , Participação Social/psicologia , Adolescente , Ansiedade/etiologia , Criança , Desenvolvimento Infantil , Pré-Escolar , Depressão/etiologia , Pessoas com Deficiência/psicologia , Feminino , Humanos , Masculino , Atividade Motora , Instituições Acadêmicas
13.
Child Care Health Dev ; 39(2): 185-93, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-22066491

RESUMO

BACKGROUND: Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. METHODS: This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. RESULTS: Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. CONCLUSIONS: In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.


Assuntos
Serviços de Saúde da Criança/organização & administração , Emigrantes e Imigrantes/psicologia , Neoplasias/etnologia , Serviço Hospitalar de Oncologia/organização & administração , Pais/psicologia , Adolescente , Adulto , Ásia/etnologia , Atitude Frente a Saúde , Canadá , Criança , Pré-Escolar , China/etnologia , Família , Feminino , Pesquisa sobre Serviços de Saúde/métodos , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Assistência Centrada no Paciente/organização & administração , Relações Profissional-Família , Pesquisa Qualitativa , Fatores Socioeconômicos
14.
Epidemiol Infect ; 138(8): 1135-45, 2010 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-20056015

RESUMO

Birth cohort has been shown to be related to morbidity and mortality from other diseases and conditions, yet little is known about the potential for birth cohort in its relation to pneumonia and influenza (P&I) outcomes. This issue is particularly important in older adults, who experience the highest disease burden and most severe complications from these largely preventable diseases. The objective of this analysis is to assess P&I patterns in US seniors with respect to age, time, and birth cohort. All Medicare hospitalizations due to P&I (ICD-9CM codes 480-487) were abstracted and categorized by single-year of age and influenza year. These counts were then divided by intercensal estimates of age-specific population levels extracted from the US Census Bureau to obtain age- and season-specific rates. Rates were log-transformed and linear models were used to assess the relationships in P&I rates and age, influenza year, and cohort. The increase in disease rates with age accounted for most of the variability by age and influenza season. Consistent relationships between disease rates and birth cohorts remained, even after controlling for age. Seasonal associations were stronger for influenza than for pneumonia. These findings suggest that there may be a set of unmeasured characteristics or events people of certain ages experienced contemporaneously that may account for the observed differences in P&I rates in birth cohorts. Further understanding of these circumstances and those resulting age and cohort groups most vulnerable to P&I may help to target health services towards those most at risk of disease.


Assuntos
Influenza Humana/epidemiologia , Pneumonia/epidemiologia , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Efeito de Coortes , Estudos de Coortes , Feminino , Hospitalização/tendências , Humanos , Estudos Longitudinais , Masculino , Análise de Regressão
15.
Neuroscience ; 159(2): 862-82, 2009 Mar 17.
Artigo em Inglês | MEDLINE | ID: mdl-19174183

RESUMO

The effect of experimentally induced acute renal failure (ARF) on neuronal cell activation was investigated by immunohistochemistry for Fos and Fra-2 in the rat brain. ARF in rats was induced by bilateral nephrectomy (BNX), bilateral ureter ligature (BUL) and uranyl acetate injection with proper controls (sham-operation or saline injections, respectively). To follow the effect of the development of ARF, rats were killed 30 and 60 min, and 3, 12, 24 and 72 h after surgery, or 3 h to 12 days after uranyl acetate injections. In the BUL and BNX rats, urea and creatinine rose markedly in the plasma within 72 h, while in the uranyl acetate-injected rats the highest levels were observed on the 7th day, followed by a marked decline. At each time-point of the three different, experimentally induced ARF, the presence of Fos- and/or Fra-2-immunoreactive neurons was determined in 120 different brain areas and nuclei. In general, the 73 of 120 brain areas that showed time and intensity dependent activation in response to ARF can be classified into four groups: 1) biogenic amine (noradrenaline, adrenaline, histamine and 5-HT) expressing cell groups in the lower brainstem, 2) "stress-sensitive" forebrain areas, with regard to certain hypothalamic, limbic and cortical areas, 3) neuronal cell groups that participate in the central regulation of body and brain water and electrolyte homeostasis, including the circumventricular organs, and 4) central autonomic cell groups, especially visceral sensory cell groups in the brain, which are in primary, secondary or tertiary connections with renal afferents. Data presented here indicate that a wide variety of neurons in several regulatory mechanisms is affected by ARF-induced peripheral and central alterations.


Assuntos
Injúria Renal Aguda/classificação , Injúria Renal Aguda/patologia , Encéfalo/metabolismo , Encéfalo/patologia , Neurônios/metabolismo , Injúria Renal Aguda/etiologia , Animais , Aminas Biogênicas/metabolismo , Peso Corporal/efeitos dos fármacos , Peso Corporal/fisiologia , Creatina/sangue , Modelos Animais de Doenças , Antígeno 2 Relacionado a Fos/metabolismo , Ligadura/efeitos adversos , Masculino , Nefrectomia/efeitos adversos , Proteínas Oncogênicas v-fos/metabolismo , Compostos Organometálicos/toxicidade , Ratos , Ratos Wistar , Fatores de Tempo , Ureia/sangue
16.
Child Care Health Dev ; 35(1): 16-22, 2009 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-18991976

RESUMO

BACKGROUND: In order to evaluate the family-centeredness of paediatric oncology services, a psychometrically sound measure of family-centred services is needed. We performed a comprehensive evaluation of the psychometric properties of the 20-item Measure of Processes of Care (MPOC-20) in parents of children undergoing treatment for cancer at five paediatric oncology centres in Canada. METHODS: The sample included 411 parents (80% response rate). Exploratory factor analysis was used to determine the best way to group the items into scales. Psychometric tests were used to examine data quality, targeting, internal consistency reliability, within-scale construct validity and known-groups validity. RESULTS: Exploratory factor analysis identified two factors: a summary measure of family-centred services and a scale measuring activities that meet parents' general informational needs. Scores spanned the entire scale range, floor and ceiling effects were low, and the sample distribution was not unduly skewed. Scales showed acceptable internal consistency reliability (Cronbach's alphas > or =0.93). Known-group hypotheses supported the scales' ability to differentiate between groups hypothesized to differ. Moderate effect sizes were found when MPOC-20 scale scores for parents and for children with good quality of life were compared with those with poor quality of life. CONCLUSIONS: The MPOC-20 is the only evaluated instrument currently available to measure family-centred services in paediatric oncology. Paediatric cancer programmes can now use this tool to determine parental perception of the extent to which services are family-centred.


Assuntos
Serviços de Saúde da Criança/normas , Atenção à Saúde/normas , Neoplasias/terapia , Pais/psicologia , Assistência Centrada no Paciente/normas , Qualidade da Assistência à Saúde/normas , Adolescente , Canadá , Institutos de Câncer/normas , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/enfermagem , Avaliação de Processos em Cuidados de Saúde/métodos , Relações Profissional-Paciente , Psicometria , Reprodutibilidade dos Testes
17.
Br J Cancer ; 100(1): 82-8, 2009 Jan 13.
Artigo em Inglês | MEDLINE | ID: mdl-19066605

RESUMO

The primary objective was to describe predictors of physical, emotional and social quality of life (QoL) in children receiving active treatment for cancer. This Canadian multi-institutional cross-sectional study included children with cancer receiving any type of active treatment. The primary caregiver provided information on child physical, emotional and social QoL according to the PedsQL 4.0 Generic Core scales. Between November 2004 and February 2007, 376 families provided the data. In multiple regression, children with acute lymphoblastic leukemia had better physical health (OR: 0.37, 95% CI 0.23, 0.60; P<0.0001) while intensive chemotherapy treatment (OR: 2.34, 95% CI: 1.42, 3.85; P=0.0008) and having a sibling with a chronic condition (OR: 2.53, 95% CI: 1.54, 4.15; P=0.0002) were associated with poor physical QoL. Better emotional health was associated with good prognosis, less intensive chemotherapy treatment and greater household savings, whereas female children and those with a sibling with a chronic condition had poor social QoL. Physical, emotional and social QoL are influenced by demographic, diagnostic and treatment variables. Sibling and household characteristics are associated with QoL. This information will help to identify children at higher risk of poor QoL during treatment for cancer.


Assuntos
Neoplasias/psicologia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Emoções , Feminino , Humanos , Modelos Logísticos , Masculino , Neoplasias/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Análise de Regressão
19.
J Perinatol ; 28(5): 368-76, 2008 May.
Artigo em Inglês | MEDLINE | ID: mdl-18288117

RESUMO

OBJECTIVE: Long-term outcomes of preterm infants have been extensively studied, but few studies have examined long-term outcomes of term infants who require neonatal intensive care unit (NICU). Our objectives were to assess perinatal characteristics and health status of preschool age term babies using data from a population-based study of NICU graduates. STUDY DESIGN: Retrospective cross-sectional survey. All babies were born in 1996 to 1997 in BC (Canada). The Health Status Classification System Preschool (HSCS-PS) questionnaire was completed by parents at 42 months of age. HSCS-PS was grouped in four categories (neurosensory, learning, motor and quality of life). Logistic regression was used to identify perinatal risk factors associated with moderate/severe problems at 42 months of age. RESULT: Completed surveys were received for 261 term NICU survivors and 393 control children. Term infants represent 32% of all NICU admissions. Mean birth weight of NICU graduates was 3458 g (s.d.=600 g). Median length-of-stay in NICU was 5 days. At 42 months, the NICU group had significantly more problems on the HSCS-PS as compared to the full-term healthy infants in neurosensory, motor and learning/remembering. Moderate/severe health status problems were associated with congenital anomalies (odds ratio (OR), 3.2; confidence interval (CI): 1.3 to 7.8); smoking status (OR, 2.7, CI: 1.1 to 6.6) and SNAP score (OR, 1.04; CI: 1.0 to 1.1). CONCLUSION: Term babies admitted to NICUs may have significant health issues in childhood. Greater attention needs to be paid to long-term outcomes of term NICU graduates. Further study is warranted to address which NICU term survivors warrant secondary and/or tertiary-level neurodevelopmental follow-up.


Assuntos
Atitude Frente a Saúde , Idade Gestacional , Nível de Saúde , Doenças do Recém-Nascido/terapia , Unidades de Terapia Intensiva Neonatal , Pais/psicologia , Sobreviventes , Peso ao Nascer , Dano Encefálico Crônico/diagnóstico , Dano Encefálico Crônico/epidemiologia , Colúmbia Britânica , Pré-Escolar , Estudos Transversais , Avaliação da Deficiência , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Doenças do Recém-Nascido/epidemiologia , Tempo de Internação , Masculino , Qualidade de Vida , Estudos Retrospectivos , Resultado do Tratamento
20.
J Ren Nutr ; 18(1): 46-51, 2008 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-18089443

RESUMO

OBJECTIVE AND DESIGN: Pain and peripheral neuropathy are frequent complications of end-stage renal disease (ESRD). Because drug treatment is associated with numerous side effects and is largely ineffective in many maintenance hemodialysis (MHD) patients, nonpharmacologic strategies such as electrotherapy are a potential recourse. Among various forms of electrostimulation, high-tone external muscle stimulation (HTEMS) is a promising alternative treatment for symptomatic diabetic peripheral polyneuropathy (PPN), as demonstrated in a short-term study. Based on these novel findings, we performed a prospective, nonrandomized, pilot trial in MHD patients to determine (1) whether HTEMS is also effective in treating diabetic PPN in the uremic state, and (2) whether uremic PPN is similarly modulated. PATIENTS AND INTERVENTIONS: In total, 40 MHD patients diagnosed with symptomatic PPN (25 with diabetic and 15 with uremic PPN) were enrolled. Both lower extremities were treated intradialytically with HTEMS for 1 hour, three times a week. Initially, a subgroup of 12 patients was followed for 4 weeks, and a further 28 patients for 12 weeks. The patients' degree of neuropathy was graded at baseline before HTEMS and after 1 and 3 months, respectively. Five neuropathic symptoms (tingling, burning, pain, numbness, and numbness in painful areas) as well as sleep disturbances were measured, using the 10-point Neuropathic Pain Scale of Galer and Jensen (Neurology 48:332-338, 1997). A positive response was defined as the improvement of one symptom or more, by at least 3 points. Other parameters included blood pressure, heart rate, dry body weight, and a routine laboratory investigation. RESULTS: The HTEMS led to a significant improvement in all five neuropathic symptoms, and to a significant reduction in sleep disturbances for both diabetic and uremic PPN. The response was independent of the patient's age, with a responder rate of 73%. The improvement of neuropathy was time-dependent, with the best results achieved after 3 months of treatment. The HTEMS was well-tolerated by nearly all patients. CONCLUSIONS: This pilot study shows for the first time that HTEMS can ameliorate the discomfort and pain associated with both diabetic and uremic PPN in MHD patients, and could be a valuable supplement in the treatment of pain and neuropathic discomfort in patients who do not respond to, or are unable to participate in, exercise programs during hemodialysis treatment.


Assuntos
Nefropatias Diabéticas/terapia , Neuropatias Diabéticas/terapia , Falência Renal Crônica/terapia , Estimulação Elétrica Nervosa Transcutânea/métodos , Uremia/terapia , Idoso , Idoso de 80 Anos ou mais , Nefropatias Diabéticas/mortalidade , Nefropatias Diabéticas/fisiopatologia , Neuropatias Diabéticas/mortalidade , Neuropatias Diabéticas/fisiopatologia , Feminino , Glomerulonefrite/fisiopatologia , Glomerulonefrite/terapia , Humanos , Ferro/sangue , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Doenças Renais Policísticas/fisiopatologia , Doenças Renais Policísticas/terapia , Estudos Prospectivos , Análise de Sobrevida , Uremia/mortalidade , Uremia/fisiopatologia
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