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INTRODUCTION: Despite a recognized association between maternal postpartum depression (PPD) and adverse child health outcomes, evidence examining the relationship between PPD symptoms and associated child health service utilization and costs remains unclear. In addition, there is a paucity of evidence describing the relationship between early identification of maternal PPD and associated health service utilization and costs for children. This study aims to address this gap by describing the secondary associations of screening for maternal PPD and annual health service utilization and costs for children over their first five years of life. METHODS: Mothers and children enrolled in the prospective All Our Families cohort were linked to provincial administrative data in Alberta, Canada. Multivariable generalized linear models were used to estimate the average annual inpatient, outpatient, physician, and total health service utilization and costs from a public health system perspective for children of mothers screened high risk for PPD, low/moderate risk for PPD, or unscreened. RESULTS: Total mean costs were greatest for children during their first year of life than other years. Those whose mothers were not screened had significantly lower costs compared to those whose mothers were screened low/moderate risk, despite equivalent health service utilization. DISCUSSION: Findings from this study describe the secondary associations of screening for maternal PPD using a public health system perspective. More research is required to fully understand variations in health costs for children across maternal PPD screening categories.
This study describes the relationship between maternal PPD screening status and annual child health service utilization and costs over the first five years of age. Findings from this administrative data study will support decision-makers in understanding the secondary effects associated with maternal PPD screening and inform future cost-effectiveness analyses of PPD screening interventions using a maternal-child health perspective.
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Serviços de Saúde da Criança , Depressão Pós-Parto , Feminino , Criança , Humanos , Depressão Pós-Parto/diagnóstico , Depressão Pós-Parto/epidemiologia , Estudos Prospectivos , Mães , Alberta/epidemiologia , Fatores de Risco , Período Pós-PartoRESUMO
The Child-Hospital Consumer Assessment of Healthcare Providers and Systems (Child-HCAHPS) survey is a validated measure of paediatric inpatient experience. The study objective was to determine which survey questions were most correlated with respondents' overall rating of care. Knowing which questions are most important may provide valuable insights for developing targeted quality improvement initiatives. METHODS: Within 6 weeks of discharge, 3,389 telephone surveys were completed by parents/guardians of children who were hospitalized for at least 24 hours. The survey was comprised of 66 questions, with responses based on Likert-scales. One survey question asked respondents to rate the overall care that their child received on a scale from 0 (worst care) to 10 (best care). The correlation between the overall rating of care and each survey measure and question was then examined using Spearman correlation coefficients. All survey questions were normalized to a 100-point score (0=worst, 100=best). RESULTS: Questions on provider coordination and nursing care were most correlated with overall experience. Quietness of hospital room (r=0.19, P<0.001), and keeping families informed in the emergency room (r=0.12, P<0.001) showed poor correlation. Correlation with overall experience was strongest for the 'communication with nurses' domain (r=0.46, P<0.001). CONCLUSIONS: To our knowledge, this is the first study which examines the correlation of individual questions of the Child-HCAHPS to overall rating of care within a Canadian context. Our results suggest that our large health care organization may attain initial inpatient experience improvements by focusing upon personnel-based initiatives, rather than physical attributes of our hospitals.
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The main purpose of head and neck reconstructive surgery is to provide anatomic restoration of the demolited region and to provide preservation and recovery of function. The anatomical investigations conducted over the years has enabled a detailed knowledge of human body vascularization, giving the opportunity to design and harvest more and more versatile and refined flaps, with increasingly satisfactory results. Even if in the last 2 decades free flaps have been considered a reconstructive criterion standard, they still determine a great physical impact for the patient and require a certain surgical experience. In particular, perforator flaps (based on vessels that, emerging from the main deep axis, supply superficial myofascial cutaneous tissues) represent the new reconstructive frontier, of which a wide variety of types has been described. Our purpose is to illustrate the preparation and harvesting of the transverse cervical artery perforator flap and the variety of its utilization in head and neck reconstruction. From February 2005 to May 2015, 41 reconstructions were performed, and not only for oncologic reasons. Thanks to its anatomical features, reduced donor site morbidity and rapid preparation, this flap is a safe and feasible alternative to most famous free and locoregional flaps. Because our outcomes in functional and aesthetic terms were mostly satisfying, we can assert that the transverse cervical artery perforator flap has an important role in an appropriate reconstructive strategy for head, neck, and oropharyngolaryngeal region.
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Neoplasias de Cabeça e Pescoço/cirurgia , Pescoço/irrigação sanguínea , Retalho Perfurante/irrigação sanguínea , Procedimentos de Cirurgia Plástica/métodos , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Estética , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esvaziamento Cervical/métodos , Duração da Cirurgia , Retalho Perfurante/transplante , Recuperação de Função Fisiológica , Estudos Retrospectivos , Medição de Risco , Resultado do Tratamento , Cicatrização/fisiologiaRESUMO
BACKGROUND: The assessment of adverse events from a patient-centered view includes patient-reported adverse outcomes. An adverse outcome refers to any suboptimal outcome experienced by the patient; when adverse outcomes are identified through a patient interview these are called patient-reported adverse outcomes. An adverse event is an adverse outcome that is more likely due to the processes of medical care rather than to the mere progression of disease. In the context of a large-scale study assessing post-hospitalization adverse events, we developed a conceptual framework to assess patient-reported adverse outcomes (PRAOs). This methodological manuscript describes this conceptual framework. METHODS: The PRAO framework builds on a validated adverse event ascertainment method including three phases: Phase 1 involves an inquiry to ascertain the occurrence of any patient-reported adverse outcome. It is completed by a structured telephone interview to obtain details - from a patient perspective - on symptoms that developed and/or worsened after hospitalization. Phase 2 involves the classification of PRAOs by physicians not involved in the patient care. Physician-reviewers then rate the PRAOs using well-adopted scales to determine whether the occurrence was the natural progression of the underlying illness or due to medical care. When the PRAO is rated as "due to medical care", it is then classified as an "adverse event". Phase 3 involves the classification of adverse events as preventable or ameliorable. RESULTS: Out of the 1347 patients contacted at 1-month post-discharge, 469 reported AOs and after reviewing 369 cases, 29 were classified as AEs. Observed agreement levels between raters were 87.3, 85.5, and 85.2 % respectively displaying a good agreement (k > 0.60). CONCLUSION: The framework incorporates PRAOs as a way to identify cases that need to be evaluated for adverse events. Further validation of this framework is warrant with the final aim of implementation at larger scale. The implementation of this framework will enable clinicians, researchers and healthcare institutions to compare outcome rates across providers and over time.
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Hospitalização , Avaliação de Resultados em Cuidados de Saúde/organização & administração , Qualidade da Assistência à Saúde , Autorrelato , Humanos , Masculino , Alta do Paciente , Segurança do PacienteRESUMO
PURPOSE: Patient engagement is influenced by institutional ideologies, professional attitudes and patient readiness to accept new, engaged roles. This article provides an opportunity to consider a new role for patients who are trained to conduct patient experience research using qualitative methods. METHODS: The emergence of the role of patient engagement researcher was studied using a grounded theory with 21 patients over one-year internship and 125 research participants. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. RESULTS: Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30 s-75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. DISCUSSION: The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. CONCLUSIONS: The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams.
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Coleta de Dados , Participação do Paciente , Adulto , Idoso , Atitude , Pesquisa Biomédica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Projetos de Pesquisa , EstudantesRESUMO
PURPOSE: Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field. METHODS: A 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. RESULTS: Sixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. CONCLUSION: This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.
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Nível de Saúde , Avaliação de Resultados da Assistência ao Paciente , Participação do Paciente/métodos , Qualidade de Vida , Congressos como Assunto , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , AutorrelatoRESUMO
PURPOSE: The inclusion of patient-reported outcome measures (PROMs) in the routine clinical care of chronically ill patients has the potential to add valuable information about the impact of the disease and its treatment and promotes effective patient self-management in which patients become more active participants in their own care. PROMs provide clinicians with timely information on patients' symptoms as well as functional and emotional status. PROMs are a useful tool for enhancing patient-clinician communication. METHODS: We develop a conceptual framework describing the potential effects of the use of PROMs in chronic care management. The framework summarizes insights from the methods for evaluating the clinical effectiveness and methods for the health technology assessment of diagnostic technologies and results from the relevant studies. RESULTS: The framework describes potential effects, from proximal to distal, including communication (patient-clinician, patient-relative, clinician-clinician, and clinician-relative), engaging patients in shared clinical decision making, patient management (clinician management and patient self-management), and patient outcomes. Important potential effects also include enhancement in patient activation as well as improvements in clinician and patient satisfaction, and patient adherence to recommended treatment. Previous frameworks have described patient-physician communication, patient satisfaction, and health outcomes. Our framework adds unique domains, including patient engagement, patient activation, shared clinical decision making, and patient self-management. CONCLUSIONS: The framework can be used as a tool to guide the development of interventions to improve chronic care management through the use of PROMs.
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Doença Crônica/terapia , Avaliação de Resultados da Assistência ao Paciente , Assistência Centrada no Paciente/métodos , Relações Médico-Paciente , Qualidade de Vida , Tomada de Decisões , Técnicas e Procedimentos Diagnósticos/instrumentação , Gerenciamento Clínico , Feminino , Humanos , Relações Interpessoais , Masculino , Cooperação do Paciente , Satisfação do Paciente , Avaliação de Programas e Projetos de Saúde , Fatores de Risco , Autocuidado/métodos , Avaliação da Tecnologia Biomédica/métodosRESUMO
INTRODUCTION: Patient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service's reach to include those of different social positions and different health conditions. Despite the popularity and prevalence of patient navigation programmes, the extent of patient involvement and/or partnership in their construction has yet to be articulated. This scoping review will explore and describe the extent to which patients have been engaged in the development and/or implementation of patient navigation programmes to date. METHODS AND ANALYSIS: This scoping review will adhere to the Arksey and O'Malley framework for conducting scoping reviews. The electronic databases MEDLINE, CINAHL, EMBASE, PsycINFO, SocINDEX and Scopus were searched in September 2023 using terms related to patient navigation and programme implementation. Inclusion criteria stipulate that the studies must: (1) include an intervention labelled as 'navigation' in a healthcare setting and (2) describe patient engagement in the design, development and/or implementation process of said patient navigation programme. To assess study eligibility, two reviewers will independently read through the titles and abstracts, followed by the full texts, of each study identified from the search strategy to determine whether they meet inclusion criteria. Reviewers will then extract data from the included studies, present descriptive study characteristics in tables, and perform qualitative content analysis. ETHICS AND DISSEMINATION: This review does not require ethics approval as data will be collated exclusively from peer-reviewed articles and thesis dissertations. A manuscript summarising the results of the review will be written and submitted to a peer-reviewed journal for publication. The review will map aspects of programme development that have repeatedly utilised patient perspectives and areas where engagement has lagged. This review will also depict how patient engagement varies across programme characteristics.
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Navegação de Pacientes , Participação do Paciente , Humanos , Navegação de Pacientes/organização & administração , Projetos de Pesquisa , Literatura de Revisão como AssuntoRESUMO
BACKGROUND: In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them. This study aimed to prioritize PROMs by youth and family/caregiver based on feasibility, relevance, and overall importance to be used in the clinical care of youth living with anxiety and/or depression. METHODS: Ten validated and widely used PROMs were presented to the patients and family/caregivers. Nominal group techniques were employed to prioritize the PROMs based on feasibility, relevance, and overall importance. RESULTS: For patients and families/caregivers, the PROMs, Revised Child Anxiety and Depression Scale (RCAD 25), and The Young Person's Core (YP-CORE) were the highest priorities. Both felt that RCAD 25 was comprehensive, short, easy, and quick to complete, whereas regarding YP-CORE, patients and family/caregivers thought it was also short and relevant. Due to some specific concerns, the Strength and Difficulties Questionnaire and Child Health Questionnaire were the lowest prioritized by patients and family/caregivers. CONCLUSION: It is of utmost importance that patient's and family/caregivers' voices or opinions are considered while selecting and implementing PROMs in mental health settings. Our study provides practical recommendations around measures best suited to achieve this.
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Ansiedade , Saúde Mental , Criança , Humanos , Adolescente , Ansiedade/terapia , Transtornos de Ansiedade , Consenso , Medidas de Resultados Relatados pelo PacienteRESUMO
OBJECTIVE: To understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada. DESIGN: A qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis. SETTING: Canada-wide study conducted via video conference from October to December 2023. PATIENTS: 12 participants from five Canadian provinces who self-identified as 18 years of age or older and as having parental lived experience with cytomegalovirus (CMV) or cCMV participated in the study. RESULTS: We identified three themes: (1) attitudes about UNS for cCMV, including participants' unanimous support for UNS and confirmation that parental anxiety is not a deterrent for screening, (2) cCMV diagnosis, including the importance of coupling cCMV diagnosis with access to treatment and medical support and (3) awareness of cCMV, where participants shared their frustration about the lack of public and pregnant people's awareness of cCMV. CONCLUSIONS: Parental anxiety is not a deterrent for UNS for cCMV. Children with cCMV and their families deserve every opportunity to attain their best possible outcomes. UNS offers children with cCMV access to early intervention if they need it, and also helps to raise awareness and education to prevent future CMV infections.
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Infecções por Citomegalovirus , Triagem Neonatal , Pais , Pesquisa Qualitativa , Humanos , Infecções por Citomegalovirus/congênito , Infecções por Citomegalovirus/diagnóstico , Canadá/epidemiologia , Triagem Neonatal/métodos , Feminino , Pais/psicologia , Recém-Nascido , Masculino , Adulto , Grupos Focais , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
OBJECTIVES: Quality assurance practices are structured performance improvement and patient safety processes designed to continuously monitor, evaluate, and improve the performance of a trauma program. These practices are integral in the provision of quality injury care, and yet no comprehensive description of existing quality improvement practices used by pediatric trauma centers is available. Therefore, we compared the quality improvement programs used in adult and pediatric trauma centers by performing a reanalysis of our recent survey of trauma quality improvement practices in Canada, United States, Australia, and New Zealand. DESIGN: Prospective observational study. SETTING: Pediatric and adult trauma centers in United States, Canada, and Australasia. PATIENTS: None. INTERVENTIONS: None. MEASUREMENTS: We surveyed 184 trauma centers verified by professional trauma organizations in the United States, Canada, and Australasia regarding their quality improvement programs. Centers were classified according to population served (adult, adult and pediatric, or pediatric patients), and quality improvement programs were compared using descriptive statistics. RESULTS: Most of the trauma centers reported engagement in quality improvement activities. Adult centers devoted a larger percentage of their quality indicators to the measurement of safety (adult 50% vs adult and pediatric 53% vs pediatric 38%, p < 0.001), whereas pediatric centers placed a greater emphasis on the timeliness of care (20% vs 24% vs 30%, p < 0.001). Few centers used quality indicators to measure the patient-centered nature of care, long-term outcomes, or secondary injury prevention. CONCLUSIONS: Opportunities for the improvement of pediatric quality improvement programs exist including a need to determine the optimal structure for trauma quality improvement, develop patient-centered quality indicators of injury care, measure long-term outcomes, and create measures of secondary injury prevention.
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Melhoria de Qualidade , Indicadores de Qualidade em Assistência à Saúde/normas , Centros de Traumatologia/normas , Adulto , Australásia , Canadá , Criança , Humanos , Estudos Prospectivos , Estados UnidosRESUMO
BACKGROUND: In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. METHODS: The RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo. RESULTS: A total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study. CONCLUSIONS: Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward.
Patient research partners contribute their valuable knowledge, lived experiences, and skills in health research projects. However, research looking to understand how patient partners and researchers can work together in a meaningful and collaborative way remains limited. We aim to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. We used a mixed methods design as it provided the opportunity to gather more insights from the RePORT PAC members' engagement experiences throughout the study and provide a deeper understanding on the barriers and facilitators to working together. We involved diverse patient research partners, clinicians/researchers, patient engagement organization team members and other stakeholders from the RePORT PAC. All PAC members were invited to complete an anonymous online survey as well as a semi-structured interview. Patient research partners appreciated the supports (e.g. training, compensation) provided throughout the project. Most PAC members felt that their views and opinions were heard, which further facilitated a collaborative team environment. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement in our research partnership and recommendations for patient-oriented research projects more broadly, going forward.
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OBJECTIVE: Implementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore, this study (1) describes the development of innovative KidsPRO programme and (2) reports on the feasibility of implementing PedsQL (Pediatric Quality of Life Inventory) PROM in asthma clinics using the KidsPRO programme. DESIGN: Feasibility assessment study. SETTING: Outpatient paediatric asthma clinics in the city of Calgary, Canada. PARTICIPANTS: Five paediatric patients, four family caregivers and three healthcare providers were recruited to pilot the implementation of PedsQL PROM using KidsPRO. Then, a survey was used to assess its feasibility among these study participants. MAIN OUTCOME MEASURES: Participants' understanding of using PROMs, the adequacy of support provided to them, the utility of using PROMs as part of their appointment, and their satisfaction with using PROMs. ANALYSES: The quantitative data generated through closed-ended questions was analysed and represented in the form of bar charts for each category of study participants (ie, patients, their family caregivers and healthcare providers). The qualitative data generated through the open-ended questions were content analysed and categorised into themes. RESULTS: The experience of using PROMs was overwhelmingly positive among patients and their family caregivers, results were mixed among healthcare providers. Qualitative data collected through open-ended questions also complemented the quantitative findings. CONCLUSION: The evidence from this study reveals that the implementation of PROMs in routine paediatric clinical care asthma clinics in Alberta is seems to be feasible.
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Pacientes Ambulatoriais , Qualidade de Vida , Humanos , Criança , Estudos de Viabilidade , Medidas de Resultados Relatados pelo Paciente , AlbertaRESUMO
OBJECTIVE: To gain an insight into coping strategies that people living with chronic pain use to self-manage their pain. DESIGN: This qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were considered and addressed throughout the research cycle. Purposeful sampling was used for recruiting individuals living with chronic pain. A focus group and one-on-one semi-structured interviews were conducted via videoconference. The data were analysed iteratively using inductive thematic analysis and narrative story analysis. SETTING: Calgary, Alberta, Canada. PARTICIPANTS: Eleven adult participants, between the ages of 18 and 65, who self-identified as living with chronic pain for greater than 2 years. RESULTS: Three main themes emerged from the data: (1) the elements of chronic pain, (2) the chronic pain journey to acceptance and (3) daily coping strategies for chronic pain. Participants thought it was important to discuss these three themes because the daily coping strategies that they employed at any given time (theme 3) depended on the factors discussed in themes 1 and 2. Overlaying all of this is also a grieving process that people living with chronic pain may have to go through more than once. Participants also identified recommendations for healthcare professionals to support people living with chronic pain. CONCLUSIONS: Dealing with chronic pain affects all aspects of a person's life and involves a grieving process. When treating patients with chronic pain, it is important for healthcare professionals to understand the journey that people living with chronic pain go through, not just coping strategies. Diagnosis is critical for a patient's acceptance and in helping them find their new normal where they can employ daily coping strategies to manage their pain.
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Dor Crônica , Adulto , Humanos , Adolescente , Adulto Jovem , Pessoa de Meia-Idade , Idoso , Dor Crônica/terapia , Adaptação Psicológica , Pesquisa Qualitativa , AlbertaRESUMO
OBJECTIVE: To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach. DESIGN: This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks. This phase included surveys and one-on-one semi-structured interviews aimed to further explore the use of PPEET in this context. Findings from the survey and interviews informed the development of PFE-Is; (3) a Delphi consensus process using a modified RAND/UCLA Appropriateness Method to identify and refine a core set of PFE-Is. PARTICIPANTS: The consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare leadership. RESULTS: From an initial list of 33 evidence-based PFE-Is identified, the consensus process yielded 18 final indicators. These PFE-Is were grouped into seven themes: communication, comfort to contribute, support needed for engagement, impact and influence of engagement initiative, diversity of perspectives, respectful engagement, and working together indicators. CONCLUSIONS: This group of final patient, family and health system leaders informed indicators can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation.
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Participação do Paciente , Humanos , Consenso , AlbertaRESUMO
OBJECTIVE: In Alberta, the Alberta Paediatric Inpatient Experience Survey (APIES) is used as a proxy-reported measure of paediatric experience. To our knowledge, the influence of casemix factors on patient experience as measured by paediatric patient experience surveys have not been reported within Canadian paediatric samples. In this paper, we sought to determine the patient and respondent factors associated with paediatric inpatient experiences in Alberta, Canada. DESIGN: Retrospective analysis of patient experience survey data. SETTING: Inpatiet acute care hospitals in Alberta, Canada. INTERVENTION AND MAIN OUTCOME MEASURES: Retrospective analyses were conducted using APIES surveys linked with eligible inpatient records (n=6262). Descriptive statistics were reported. χ2 tests were performed to assess distribution of casemix between general and paediatric hospitals. Logistic regression was performed with overall hospital experience as the dependent variable with casemix and hospital variables as independent variables. RESULTS: Casemix characteristics were unevenly distributed between general and paediatric hospitals. Compared with reference categories, older respondents, healthier patients and treatment at paediatric facilities had increased odds of providing most-positive ratings. Increased respondent education was associated with decreased odds of providing most-positive ratings. Likelihood-ratio tests showed that most casemix variables improved model fit, except for respondent relationship to the patient. CONCLUSIONS: To improve reports of paediatric inpatient experience, administrators and providers require reliable and comparable measurement. Both the Child Hospital Consumer Assessment of Healthcare Providers and Systems and other measures of patient and family experience need to consider patient and respondent characteristics when interpreting results. Considered with other research from patient experience in Alberta, we discuss future directions and quality improvement implications.
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Hospitais Pediátricos , Pacientes Internados , Alberta , Criança , Humanos , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: Our objective was to validate a Social Vulnerabilities Survey that was developed to identify patient barriers in the following domains: (1) salience or priority of health; (2) social support; (3) transportation; and (4) finances. DESIGN: Cross-sectional psychometric study.Questions for one domain (health salience) were developed de novo while questions for the other domains were derived from national surveys and/or previously validated questionnaires. We tested construct (ie, convergent and discriminative) validity for these new questions through hypothesis testing of correlations between question responses and patient characteristics. Exploratory factor analysis was conducted to determine structural validity of the survey as a whole. SETTING: Patients admitted to the inpatient internal medicine service at a tertiary care hospital in Calgary, Canada. PARTICIPANTS: A total of 406 patients were included in the study. RESULTS: The mean age of respondents was 55.5 (SD 18.6) years, with the majority being men (55.4%). In feasibility testing of the first 107 patients, the Social Vulnerabilities Survey was felt to be acceptable, comprehensive and met face validity. Hypothesis testing of the health salience questions revealed that the majority of observed correlations were exactly as predicted. Exploratory factor analysis of the global survey revealed the presence of five factors (eigenvalue >1): social support, health salience, drug insurance, transportation barriers and drug costs. All but four questions loaded to these five factors. CONCLUSIONS: The Social Vulnerabilities Survey has face, construct and structural validity. It can be used to measure modifiable social vulnerabilities, such that their effects on health outcomes can be explored and understood.
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Pacientes Internados , Vulnerabilidade Social , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Estudos Transversais , Inquéritos e Questionários , Apoio Social , Psicometria , Reprodutibilidade dos TestesRESUMO
Primary Health Care is a gateway of healthcare services. The COVID-19 pandemic has modified the process of delivering care. We aimed to assess Albertan's healthcare experiences during the pandemic and compared experiences between Albertans that were born in and outside Canada. A cross-sectional online survey (experiences and impacts of COVID-19) was conducted in October 2020, 16 years, and older Albertans. Descriptive statistics and multivariable logistic regression were performed using STATA. Of 10â 175 study participants, 10% were born outside Canada. Demographics were significantly different between the 2 groups (P < .05). Results revealed that Canadian-born were more likely to report worse mental and physical health status (AOR = 1.36; 95% CI: 1.17-1.56), and higher stress, anxiety, and depression during the pandemic (AOR = 1.37; 95% CI: 1.16-1.60) than those born outside Canada. However, Canadian-born reported a trend toward better virtual care experiences (AOR = 1.16; 95% CI: 0.94-1.44). Albertans reported negative health impacts due to delay in care during the pandemic and vaccine hesitancy for COVID-19, which was not significantly difference among the cohorts (P > .05). The study findings can inform primary healthcare providers and policymakers that could be used to develop quality improvement strategies.
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OBJECTIVES: To ensure optimal implementation of person-centred quality indicators (PC-QIs), we assessed the readiness of Canadian healthcare organisations and explored their perceived barriers and facilitators to implementing and using PC-QIs. DESIGN: Mixed methods. SETTING AND PARTICIPANTS: Representatives of Canadian healthcare delivery and coordinating organisations that guide the development and/or implementation of person-centred care (PCC) measurement. Representatives from primary care clinics and organisations from the province of Alberta, Canada also participated. METHODS: We conducted a survey with representatives of Canadian healthcare organisations. The survey comprised two sections that: (1) assessed readiness for using PC-QIs, and (2) were based on the Organizational Readiness for Change Assessment tool. We summarised the survey results using descriptive statistics. We then conducted follow-up interviews with organisations representing system and clinical-level perspectives to further explore barriers and facilitators to implementing PC-QIs. The interviews were informed by and analysed using the Consolidated Framework for Implementation Research. RESULTS: Thirty-three Canadian regional healthcare organisations across all 13 provinces/territories participated in the survey. Only 5 of 26 PC-QIs were considered highly feasible to implement for 75% of organisations and included: coordination of care, communication, structures to report performance, engaging patients and caregivers and overall experience. A representative sample of 10 system-level organisations and 11 primary care organisations/clinics participated in the interviews. Key barriers identified were: resources and staff capacity for quality improvement, a shift in focus to COVID-19 and health provider motivation. Facilitators included: prioritisation of PCC measurement, leadership and champion engagement, alignment with ongoing provincial strategic direction and measurement efforts, and the use of technology for data collection, management and reporting. CONCLUSIONS: Despite high interest and policy alignment to use PC-QI 'readiness' to implement them effectively remains a challenge. Organisations need to be supported to collect, use and report PCC data to make the needed improvements that matter to patients.
Assuntos
COVID-19 , Indicadores de Qualidade em Assistência à Saúde , Alberta , Humanos , Melhoria de Qualidade , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful. The purpose of this study is to evaluate patient engagement processes and the activities of patient partners during and after a paediatric mental healthcare trial. METHODS AND ANALYSIS: Using a mixed-methods study design, we will evaluate patient partners' engagement activities across set time-points during the trial and after trial completion. In this study, the term 'patient partner' is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15-24 years). Engagement will be evaluated using the participant and project questionnaires of the Public and Patient Engagement Evaluation Tool (PPEET), followed sequentially by semi-structured interviews. Quantitative data from the PPEET questionnaire will be analysed and reported using descriptive statistics. Data from open-ended questions from the PPEET questionnaires and semi-structured interviews will be analysed using thematic analysis. ETHICS AND DISSEMINATION: Approval from Athabasca University Research Ethics Board will be obtained for this project. Findings will be disseminated at both academic and public venues whether in-person or online, and using platforms that are caregiver and youth friendly. TRIAL REGISTRATION NUMBER: NCT04902391.