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1.
Health Expect ; 23(3): 523-539, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32157777

RESUMO

BACKGROUND: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured. OBJECTIVE: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships. SEARCH STRATEGY: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand-searched. INCLUSION CRITERIA: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach. MAIN RESULTS: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles. DISCUSSION: Addressing power dynamics in patient partner-researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research. CONCLUSIONS: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.

2.
J Med Internet Res ; 22(3): e15548, 2020 03 18.
Artigo em Inglês | MEDLINE | ID: mdl-32186521

RESUMO

BACKGROUND: Cardiac and major vascular surgeries are common surgical procedures associated with high rates of postsurgical complications and related hospital readmission. In-hospital remote automated monitoring (RAM) and virtual hospital-to-home patient care systems have major potential to improve patient outcomes following cardiac and major vascular surgery. However, the science of deploying and evaluating these systems is complex and subject to risk of implementation failure. OBJECTIVE: As a precursor to a randomized controlled trial (RCT), this user testing study aimed to examine user performance and acceptance of a RAM and virtual hospital-to-home care intervention, using Philip's Guardian and Electronic Transition to Ambulatory Care (eTrAC) technologies, respectively. METHODS: Nurses and patients participated in systems training and individual case-based user testing at two participating sites in Canada and the United Kingdom. Participants were video recorded and asked to think aloud while completing required user tasks and while being rated on user performance. Feedback was also solicited about the user experience, including user satisfaction and acceptance, through use of the Net Promoter Scale (NPS) survey and debrief interviews. RESULTS: A total of 37 participants (26 nurses and 11 patients) completed user testing. The majority of nurse and patient participants were able to complete most required tasks independently, demonstrating comprehension and retention of required Guardian and eTrAC system workflows. Tasks which required additional prompting by the facilitator, for some, were related to the use of system features that enable continuous transmission of patient vital signs (eg, pairing wireless sensors to the patient) and assigning remote patient monitoring protocols. NPS scores by user group (nurses using Guardian: mean 8.8, SD 0.89; nurses using eTrAC: mean 7.7, SD 1.4; patients using eTrAC: mean 9.2, SD 0.75), overall NPS scores, and participant debrief interviews indicated nurse and patient satisfaction and acceptance of the Guardian and eTrAC systems. Both user groups stressed the need for additional opportunities to practice in order to become comfortable and proficient in the use of these systems. CONCLUSIONS: User testing indicated a high degree of user acceptance of Philips' Guardian and eTrAC systems among nurses and patients. Key insights were provided that informed refinement of clinical workflow training and systems implementation. These results were used to optimize workflows before the launch of an international RCT of in-hospital RAM and virtual hospital-to-home care for patients undergoing cardiac and major vascular surgery.


Assuntos
Doenças Cardiovasculares/cirurgia , Serviços de Assistência Domiciliar/normas , Hospitais/normas , Monitorização Fisiológica/métodos , Interface Usuário-Computador , Idoso , Feminino , Humanos , Masculino , Período Pós-Operatório
3.
CMAJ Open ; 7(4): E654-E664, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31699686

RESUMO

BACKGROUND: Chronic pain affects 1-3 million Canadian children and adolescents and their families. The primary objective of the Partnering For Pain project was to collaboratively identify the top 10 research priorities in pediatric chronic pain. METHODS: Partnering For Pain took a patient-oriented research approach and followed a modified James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities in pediatric chronic pain according to people with lived experience (patients), family members and health care providers (clinicians). The PSP was completed in 4 phases between May and December 2018: 1) national survey of stakeholders, including those with lived experience with pediatric chronic pain, family members and clinicians who treat children with chronic pain, to gather priorities, 2) data processing, 3) interim prioritization by invited patients, family members and clinicians (former research participants or identified through pediatric chronic pain programs, patient partner organizations and steering committee member networks) and 4) in-person priority-setting workshop involving patients, family members and clinicians identified via steering committee networks and partner organizations, with evaluation of patient engagement. The process was led by a national steering committee of patient and parent partners, researchers and clinicians engaged in codesign, analysis and translation of project findings. RESULTS: In phase 1, 215 Canadians (86 patients [40.0%], 56 family members [26.0%] and 73 clinicians [34.0%]) submitted 540 potential priorities that were developed into 112 unique research questions (phase 2). Of the 112 questions, 63 were rated for importance by 57 participants (19 patients [33%], 17 family members [30%] and 21 clinicians [37%]) in phase 3. In phase 4, 20 participants (6 patients [30%], 6 family members [30%] and 8 clinicians [40%]) discussed the 25 most highly rated questions and reached consensus on the final top 10. INTERPRETATION: The final priorities address pediatric chronic pain prevention, impact and treatment, as well as delivery, access and coordination of care. The priorities reflect a directed and collaborative call to action to improve existing pediatric pain research and care. PLAIN LANGUAGE SUMMARY: Chronic pain affects 1 in 5 children and teens. This means that 1-3 million Canadian youth deal with pain lasting months to years. This pain gets in the way of being active, sleeping, going to school, and getting along with friends and family. Youth with chronic pain and their families are experts on what it's like to live with pain, but, until now, research has not asked what issues they care about most. The goal of the Partnering For Pain project was to develop a list of the 10 most important things we still need to learn about chronic pain during childhood according to people who live with it, their families and health care providers. We did this in 4 steps: 1) a survey with 215 people who shared 540 concerns they have about chronic pain in childhood, 2) turning those concerns into questions that can be answered by research, 3) a survey with 57 people who ranked how important each research question was and 4) an in-person discussion with 20 people who chose the top 10 research priorities. Each step included Canadians who have had chronic pain during childhood, their families and health care providers. The final top 10 list has questions about how to better prevent and care for children and teens with chronic pain. These priorities make sure that future research focuses on what is most important to people who will use it in their everyday lives. Project video: https://youtu.be/wA-RwrFiSPk. Project website: www.partneringforpain.com.

4.
JMIR Pediatr Parent ; 2(2): e15106, 2019 Nov 21.
Artigo em Inglês | MEDLINE | ID: mdl-31750840

RESUMO

BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. OBJECTIVE: We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. METHODS: A systematic scoping review of the literature was conducted, guided by the Arksey and O'Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. RESULTS: A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. CONCLUSIONS: The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.

5.
BMJ Open ; 9(2): e022995, 2019 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-30826789

RESUMO

INTRODUCTION: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not. METHODS AND ANALYSES: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score. ETHICS AND DISSEMINATION: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals. TRIAL REGISTRATION NUMBER: NCT01842568.


Assuntos
Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Dor Crônica/etiologia , Adulto , Ansiedade/complicações , Ansiedade/epidemiologia , Procedimentos Cirúrgicos Cardíacos/economia , Procedimentos Cirúrgicos Cardíacos/psicologia , Dor Crônica/economia , Dor Crônica/psicologia , Efeitos Psicossociais da Doença , Feminino , Custos de Cuidados de Saúde/estatística & dados numéricos , Humanos , Masculino , Dor Pós-Operatória/etiologia , Dor Pós-Operatória/psicologia , Estudos Prospectivos , Escalas de Graduação Psiquiátrica , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida , Fatores de Risco
6.
Can J Cardiol ; 34(7): 850-862, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29960614

RESUMO

Worldwide, more than 230 million adults have major noncardiac surgery each year. Although surgery can improve quality and duration of life, it can also precipitate major complications. Moreover, a substantial proportion of deaths occur after discharge. Current systems for monitoring patients postoperatively, on surgical wards and after transition to home, are inadequate. On the surgical ward, vital signs evaluation usually occurs only every 4-8 hours. Reduced in-hospital ward monitoring, followed by no vital signs monitoring at home, leads to thousands of cases of undetected/delayed detection of hemodynamic compromise. In this article we review work to date on postoperative remote automated monitoring on surgical wards and strategy for advancing this field. Key considerations for overcoming current barriers to implementing remote automated monitoring in Canada are also presented.


Assuntos
Monitorização Fisiológica/métodos , Cuidados Pós-Operatórios/métodos , Procedimentos Cirúrgicos Operatórios , Telemedicina/métodos , Sinais Vitais/fisiologia , Humanos
7.
Pediatr Blood Cancer ; 64(4)2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27786409

RESUMO

BACKGROUND: Adolescence is a vulnerable time for teens with sickle cell disease (SCD). Although there is evidence to support the use of web-based education to promote self-management skills in patients with chronic illnesses, the quality of SCD-related information on the Internet has not been assessed. PROCEDURE: A website review was conducted to appraise the quality, content, accuracy, readability, and desirability of online information for the adolescents with SCD. Relevant keywords were searched on the most popular search engines. Websites meeting predetermined criteria were reviewed. The quality of information was appraised using the validated DISCERN tool. Two physicians independently rated website completeness and accuracy. Readability of the sites was documented using the simple measure of gobbledygook (SMOG) scores and the Flesch Reading Ease (FRE). The website features considered desirable by youth were tracked. RESULTS: Search results yielded >600 websites with 25 unique hits meeting criteria. The overall quality of the information was "fair" and the average DISCERN rating score was 50.1 (±9.3, range 31.0-67.5). Only 12 of 25 (48%) websites had scores >50. The average completeness score was 20 of 29 (±5, range 12-27). No errors were identified. The mean SMOG score was 13.04 (±2.80, range 10.21-22.85) and the mean FRE score was 46.05 (±11.47; range 17.50-66.10), suggesting that the material was written well beyond the acceptable reading level for patient education. The websites were text-heavy and lacked the features that appeal to youth (chat, games, videos, etc.). CONCLUSION: Given the paucity of high-quality health information available for the teens with SCD, it is essential that additional online resources be developed.


Assuntos
Anemia Falciforme , Serviços de Informação/normas , Internet/normas , Educação de Pacientes como Assunto/normas , Garantia da Qualidade dos Cuidados de Saúde/normas , Autocuidado , Adolescente , Doença Crônica , Compreensão , Feminino , Humanos , Disseminação de Informação , Masculino
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