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Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group.

ABSTRACT: Patient- and stakeholder-oriented research is vital to improving the relevance of research. The authors aimed to identify the 10 most important research priorities of patients, caregivers, and healthcare providers (family physicians, nurses, nurse practitioners, pharmacists, and dietitians) for hypertension management. Using the James Lind Alliance approach, a national web-based survey asked patients, caregivers, and care providers to submit their unanswered questions on hypertension management. Questions already answered from randomized controlled trial evidence were removed. A priority setting process of patient, caregiver, and healthcare providers then ranked the final top 10 research priorities in an in-person meeting. There were 386 respondents who submitted 598 questions after exclusions. Of the respondents, 78% were patients or caregivers, 29% lived in rural areas, 78% were aged 50 to 80 years, and 75% were women. The 598 questions were distilled to 42 unique questions and from this list, the top 10 research questions prioritized included determining the combinations of healthy lifestyle modifications to reduce the need for antihypertensive medications, stress management interventions, evaluating treatment strategies based on out-of-office blood pressure compared with conventional (office) blood pressure, education tools and technologies to improve patient motivation and health behavior change, management strategies for ethnic groups, evaluating natural and alternative treatments, and the optimal role of different healthcare providers and caregivers in supporting patients with hypertension. These priorities can be used to guide clinicians, researchers, and funding bodies on areas that are a high priority for hypertension management research for patients, caregivers, and healthcare providers. This also highlights priority areas for improved knowledge translation and delivering patient-centered care.

SUBMITTER: Khan N

PROVIDER: S-EPMC8031279 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:OBJECTIVES:To identify research priorities for hypertensive disorders of pregnancy from individuals with lived experience and healthcare professionals. DESIGN:Prospective surveys and consensus meetings using principles outlined by the James Lind Alliance. SETTING:UK. METHODS:A steering group was established and 'uncertainties' were gathered using an online survey and literature search. An interim online survey ranked long-listed questions and the top 10 research questions were reached by consensus at a final prioritisation workshop. PARTICIPANTS:Women, partners, relatives and friends of those with lived experience of pregnancy hypertension, researchers and healthcare professionals. RESULTS:The initial online survey was answered by 278 participants (180 women with lived experience, 9 partners/relatives/friends, 71 healthcare professionals and 18 researchers). Together with a literature search, this identified 764 questions which were refined into 50 summary questions. All summary questions were presented in an interim prioritisation survey that was answered by 155 participants (87 women with lived experience, 4 partners/relatives/friends, 49 healthcare professionals and 15 researchers). The top 25 highest ranked questions were considered by the final prioritisation workshop. The top 10 uncertainties were identified by consensus and ranked as follows in order of priority: long-term consequences of pregnancy hypertension (for the woman and baby), short-term complications of pregnancy hypertension (for the woman and baby), screening tests for pre-eclampsia, prevention of long-term problems (for the woman and baby), causes of pregnancy hypertension, prevention of recurrent pregnancy hypertension, educational needs of healthcare professionals, diagnosis of pre-eclampsia, management of pregnancy hypertension, provision of support for women and families. CONCLUSIONS:Research priorities shared by those with lived experience of pregnancy hypertension and healthcare professionals have been identified. Researchers should use these to inform the choice of future studies in this area.

Project description: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.

Project description:A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Project description:ObjectivesAutosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney condition, accounting for 7%-10% of patients with kidney failure. Fundamental basic science and clinical research on ADPKD is underway worldwide but no one has yet considered which areas should be prioritised to maximise returns from limited future funding. The Polycystic Kidney Disease Charity began a priority setting partnership with the James Lind Alliance (JLA) in the UK in 2019-2020 to identify areas of uncertainty in the ADPKD care pathway and allow patients, carers and healthcare professionals to rank the 10 most important questions for research.DesignThe scope covered ADPKD diagnosis and management, identifying new treatments to prevent/slow disease progression and practical, integrated patient support (https://pkdcharity.org.uk/research/for-researchers/adpkd-research-priorities). We used adapted JLA methodology. Initially, an independent information specialist collated uncertainties in ADPKD care from recent consensus conference proceedings and additional literature. These were refined into indicative questions with Steering Group oversight. Finally, the 10 most important questions were established via a survey and online consensus workshop.SettingUK.Participants747 survey respondents (76% patients, 13% carers, 11% healthcare professionals); 23 workshop attendees.Results117 uncertainties in ADPKD care were identified and refined into 35 indicative questions. A shortlist of 17 questions was established through the survey. Workshop participants reached agreement on the top 10 ranking. The top three questions prioritised by patients, carers and healthcare professionals centred around slowing disease progression, identifying persons for early treatment and organising care to improve outcomes.ConclusionsOur shortlist reflects the varied physical, psychological and practical challenges of living with and treating ADPKD, and perceived gaps in knowledge that impair optimal care. We propose that future ADPKD research funding takes these priorities into account to focus on the most important areas and to maximise improvements in ADPKD outcomes.

Project description:BackgroundRetinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada.MethodsAn adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop.ResultsIn total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada.InterpretationThe list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process.

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Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group.

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