Research Priorities Of Patients Research Articles

Hormone Deprivation–Free Survival—Inequities Persist in Research Priorities for Patients With Cancer

Hormone Deprivation–Free Survival—Inequities Persist in Research Priorities for Patients With Cancer

Review article: current and future treatment approaches for pain in IBS.

Abdominal pain is a core symptom of IBS and a primary driver of care seeking. Visceral hypersensitivity is a key pathophysiological mechanism and therapeutic target for pain in IBS, with components of peripheral and central sensitisation and psychological factors. To review current and future treatment approaches specifically for the pain component of IBS. Pubmed search terms included combinations of irritable bowel, pain, visceral hypersensitivity, novel, new, emerging, future and advances. Established non-pharmacological treatments for IBS pain include the low FODMAP diet, probiotics and psychological interventions, especially hypnotherapy. Tricyclics remain the best evidenced pharmacological approach with GCC agonists, tenapanor, lubiprostone, eluxadoline and 5HT3 antagonists second line according to patient characteristics and availability. Less well-evidenced current options include anti-spasmodics, peppermint oil, SSRIs, SNRIs, alpha 2 delta ligands, melatonin and histamine antagonists. Patients are vulnerable to iatrogenesis and harmful approaches to be avoided include opioids and unwarranted surgical interventions. For severe pain, the concept of augmentation with combined gut-brain neuromodulators and psychotherapy in a multi-disciplinary setting is considered. A plethora of molecular targets and ligands are emerging from pre-clinical studies, together with early clinical evidence for a range of pharmacological, dietary, neurostimulation and novel psychological treatment delivery methods which are reviewed. The history of such emerging approaches, however, merits both caution and optimism in equal measure. Despite good in-roads and emerging options, the management of abdominal pain remains one of the biggest challenges and research priorities for patients with IBS.

PP228 Strategy For Including Information On The Research Priorities Of Patients And Experts In Health Technology Assessment Reports

IntroductionThe process of health technology assessment (HTA) is an opportunity to identify gaps in the existing knowledge on the technology assessed. In January 2020, the Evaluation Unit of the Canary Islands Health Service, belonging to the Spanish Network of Agencies for Assessing National Health System Technologies and Performance, started a structured strategy to include in its HTA reports information on research priorities for the assessed technologies from the perspective of patients, clinicians, and researchers. The aim of this poster is to explain the methodology behind this strategy.MethodsThe following three-step process was proposed: (i)Identify the knowledge gaps regarding the technology from systematic reviews on effectiveness, safety, and cost effectiveness, in addition to ethical, patient, social, legal, and organizational aspects analyzed for the HTA report;(ii)Search for specific studies on research needs regarding the technology on the websites of specialized initiatives such as the Core Outcome Measures in Effectiveness Trials (COMET) and the James Lind Alliance; and(iiii)If no needs are identified in the previous two steps, consult a group of clinicians or researchers and patients related to the technology being assessed with two online survey rounds using the Delphi method. The first round identifies the research needs and the second round prioritizes the identified needs.ResultsSince the methodology to identify future research needs during a HTA process was designed, it has been used in three HTA reports during 2020 with satisfactory results. Only one of the three reports required a Delphi study.ConclusionsThe proposed strategy provides a comprehensive list of knowledge gaps on health technologies that need to be addressed in the near future from the point of view of patients, clinicians, and researchers.

Research priorities for patients with peripheral arterial disease: a James Lind Alliance Priority Setting Partnership

Introduction: Peripheral arterial disease (PAD) is a common health problem associated with reduced mobility, functional capacity and quality of life. Significant research exists in the field of vascular surgery, but its relevance to the research priorities of patients/carers and clinicians/healthcare professionals is unknown. The aim of this process, conducted by the Vascular Society of Great Britain and Ireland with the James Lind Alliance (JLA), was to identify the key research priorities for PAD, from the perspective of patients/carers and clinicians/healthcare professionals. Methods: A modified JLA Priority Setting Partnership was performed in three stages: (1) a clinician/healthcare professional-led Delphi process; (2) a patient/carer-led JLA process; and (3) amalgamation of patient/carer and clinician/healthcare professional-led results for a final round of JLA-led prioritisation. The clinician/healthcare professional Delphi process surveyed vascular clinicians/healthcare professionals, inviting them to submit important research priorities for vascular surgery. This generated a list of priorities which were redistributed for interim scoring. The priorities fitted into nine specific Special Interest Groups (SIGs), one being PAD. This was followed by a patient/carer Delphi process (in association with the JLA) using a similar two-stage process. Finally, research priorities formed by these two processes were amalgamated to produce a refined list relevant to PAD. The PAD SIG then held a final JLA consensus workshop which was attended by patients/carers and clinicians/healthcare professionals, where a nominal group technique was used to produce a ranked top 10 list of research priorities specific to PAD. Results: In the clinician/healthcare professional Delphi process, 481 clinicians/healthcare professionals submitted 1,231 research priorities related to vascular conditions. Two hundred and six PAD-specific priorities were amalgamated into 17 priorities which were recirculated for scoring according to perceived importance. For patients/carers, 582 research priorities were submitted by 373 individuals, and 114 PAD specific priorities were amalgamated into 9. These were recirculated for scoring according to perceived importance. After amalgamation of both sets of priorities, 12 remained, which were discussed at the final consensus meeting, resulting in a final ranked list of 10 PAD-specific research priorities. Research priority themes included improving outcomes, maximising non-invasive therapy, education and diagnosis, and stopping/slowing down PAD and cardiovascular disease progression. Conclusions: We have identified the top 10 PAD-related research priorities from the perspective of patients/carers and clinicians/healthcare professionals. This should provide guidance for researchers, clinicians, healthcare professionals and funders to ensure that proposed PAD research is addressing priorities that are considered important to all parties.

Nephrology and Palliative Care Collaboration in the Care of Patients With Advanced Kidney Disease: Results of a Clinician Survey

Rationale & ObjectiveDespite calls for integrating palliative care into chronic kidney disease (CKD) care, uptake remains low. The study aim was to describe clinicians’ perceptions of the clinical and research priorities in CKD care and the main barriers to collaboration.Study DesignThis was a descriptive cross-sectional study using an online survey developed by clinicians and researchers as the primary data collection method.Setting & ParticipantsClinicians in nephrology and palliative care departments (N = 195) at an academic health center in Virginia were invited to participate. Of the 48.7% (n = 95) who responded, most were registered nurses (65.3%) in nephrology (80%) with more than 15 years’ experience (40%).PredictorsFactors including discipline (nursing, social work, and physician) and practice area (palliative care or nephrology) were assessed.OutcomesMain outcomes of interest included clinicians’ perceptions of the role of palliative care, barriers to collaboration, and the top clinical and research priorities for patients with advanced CKD.Analytic ApproachSurvey data were analyzed using SPSS using descriptive statistics.ResultsRespondents reported being comfortable caring for patients near the end of life and endorsed advance care planning and collaboration between nephrology and palliative care teams. However, both rarely happen. Fragmentation, or poor coordination of care, was perceived to be the main barrier to collaboration. Perceptions regarding collaboration facilitation differed; nephrology clinicians identified patient/family education as the most important facilitator while palliative care clinicians identified clinician education as most important. Top clinical priorities differed. Palliative care clinicians reported pain/symptom management as taking priority while nephrology clinicians identified caregiver/family support. Developing interventions to support treatment-related decision making was the top research priority.LimitationsResults reflect perceptions of about half the clinicians at 1 academic health center.ConclusionsAdditional studies to capture patients’ and families’ perspectives and examine end-of-life care processes are needed. Results may inform future targeted interventions.

Research Priorities for Patients with Heart Failure and Central Sleep Apnea. An Official American Thoracic Society Research Statement.

Background: Central sleep apnea (CSA) is common among patients with heart failure and has been strongly linked to adverse outcomes. However, progress toward improving outcomes for such patients has been limited. The purpose of this official statement from the American Thoracic Society is to identify key areas to prioritize for future research regarding CSA in heart failure.Methods: An international multidisciplinary group with expertise in sleep medicine, pulmonary medicine, heart failure, clinical research, and health outcomes was convened. The group met at the American Thoracic Society 2019 International Conference to determine research priority areas. A statement summarizing the findings of the group was subsequently authored using input from all members.Results: The workgroup identified 11 specific research priorities in several key areas: 1) control of breathing and pathophysiology leading to CSA, 2) variability across individuals and over time, 3) techniques to examine CSA pathogenesis and outcomes, 4) impact of device and pharmacological treatment, and 5) implementing CSA treatment for all individualsConclusions: Advancing care for patients with CSA in the context of heart failure will require progress in the arenas of translational (basic through clinical), epidemiological, and patient-centered outcome research. Given the increasing prevalence of heart failure and its associated substantial burden to individuals, society, and the healthcare system, targeted research to improve knowledge of CSA pathogenesis and treatment is a priority.

Priorities of patients, caregivers and health-care professionals for health research - A systematic review.

BackgroundBased on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance.ObjectiveThis article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used.Search strategyThree electronic databases were searched on 22 May 2018. The search was not limited to any time period or language.Inclusion criteriaThe included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem.Data extraction and synthesisThe 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme.Main resultsThe priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods.Discussion and conclusionsThis review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.

"Can I go to Glasgow?" Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD).

Recognition of the discrepancy between the research priorities of patients and health professionals has prompted efforts to involve patients as active contributors in research activities, including scientific conferences. However, there is limited evidence about the experience, challenges, and impacts of patient involvement to inform best practice. This study aims to describe patient and health professional perspectives on patient involvement at the Congress of the International Society for Peritoneal Dialysis (ISPD). Semi-structured interviews were conducted with 14 patients/caregivers and 15 health professionals from six countries who attended ISPD. Interviews were recorded and transcribed verbatim, and transcripts were analyzed thematically. We identified four themes: protecting and enhancing scientific learning (grounding science in stories, sharing and inspiring new perspectives, distilling the key messages of research presentations, striking a balance between accommodating patients and presenting the science); democratizing access to research (redistributing power, challenging the traditional ownership of knowledge, cultivating self-management through demystifying research); inadequate support for patient/caregiver delegates (lacking purposeful inclusion, challenges in interpreting research findings, soliciting medical advice, difficulty negotiating venue and program, limited financial assistance in attending); and amplifying impact beyond the room (sparking innovation in practice, giving patients and families hope for the future). Patient involvement at the ISPD Congress clarified the applicability of research to patient care and self-management, democratized science, and strengthened the potential impact of research. More structured support for patients to help them purposefully articulate their experience in relation to session objectives may enhance their contribution and their own learning experience.

P78 Recovery priorities for patients with degenerative cervical myelopathy

ObjectivesThe misalignment of patient and researcher objectives has been shown to contribute to research inefficiency and wastage. The patient research priorities in degenerative cervical myelopathy [DCM] are unknown. The present study aimed to establish relevant functional domains and their recovery priority to DCM sufferers.DesignFunctional domains were established from qualitative patient interviews (n=4), and the recovery priority through an e-survey (n=659).SubjectsDCM Patients recruited via a DCM charity [Myelopathy.org] and Google Adwords.MethodsSeven functional domains were identified: arm and hand, walking, upper body/trunk, sexual, elimination of pain, normal sensation and bladder/bowel function. Patients were asked to rank these domains. The influence of disease characteristics on selection was analysed.Results481 complete responses were analysed. Overall, pain was the most popular recovery priority (39.9%), followed by walking (20.2%), sensation (11.9) and arm and hand function (11.5%). Sexual function (5.7%), bladder and bowel (3.7%) or trunk function (3.5%) were chosen less frequently. With respect to disease characteristics, overall pain remained the recovery priority [with the exception of patients with greater walking impairment (p<0.005) who prioritised walking] even amongst patients with lower pain scores.ConclusionsPain is a recovery priority for DCM patients, even amongst those reporting low levels of pain.

Consensus research priorities for facial palsy: A Delphi survey of patients, carers, clinicians and researchers

Despite the potential negative impact of facial palsy, major gaps in understanding persist surrounding the treatment and care of those affected. This collaborative three-round Delphi process aimed to identify priorities for future facial palsy research, from the perspective of clinicians, researchers, patients and carers. It also determined whether the research priorities of patients and carers aligned with those of health professionals and researchers. In Round 1, participants (n = 85) were asked to generate research questions by focus groups or an online or postal survey. In Rounds 2 (n = 72) and 3 (n = 78), participants were asked to rate the priorities identified on a 5-point ordinal scale. Thirty-six questions reached the definition of 'high priority' consensus. Seven of each groups' top ten research priorities were shared. Prioritised questions included the provision and pathways of care, the psychosocial impact of living with facial palsy and the effective management of side effects. Establishing the research priorities in the field of facial palsy is a significant first step in ensuring that the future research agenda is focussed on topics that are considered important by both patients and health professionals.

Establishing research priorities relating to the long-term impact of TIA and minor stroke through stakeholder-centred consensus

Plain English summaryWhat is the problem and why is this important?Mini-strokes are similar to full strokes, but symptoms last less than 24 h. Many people (up to 70%) have long-term problems after a mini-stroke, such as anxiety; depression; problems with brain functioning (like memory loss); and fatigue (feeling tired). However, the current healthcare pathway only focuses on preventing another stroke and care for other long-term problems is not routinely given. Without proper treatment, people with long-term problems after a mini-stroke could have worse quality of life and may find it difficult to return to work and their social activities.What is the aim of the research?We wanted to understand the research priorities of patients, health care professionals and key stakeholders relating to the long-term impact of mini-stroke.How did we address the problem?We invited patients, clinicians, researchers and other stakeholders to attend a meeting. At the meeting people discussed the issues relating to the long-term impact of mini-stroke and came to an agreement on their research priorities. There were three stages: (1) people wrote down their individual research suggestions; (2) in smaller groups people came to an agreement on what their top research questions were; and (3) the whole group agreed final research priorities.What did we find?Eleven people attended who were representatives for patients, GPs, stroke consultants, stroke nurses, psychologists, the Stroke Association (charity) and stroke researchers, The group agreed on eleven research questions which they felt were the most important to improve health and well-being for people who have had a mini-stroke.The eleven research questions encompass a range of categories, including: understanding the existing care patients receive (according to diagnosis and geographical location); exploring what optimal care post-TIA/minor stroke should comprise (identifying and treating impairments, information giving and support groups) and how that care should be delivered (clinical setting and follow-up pathway); impact on family members; and education/training for health care professionals.Background Clinical management after transient ischaemic attack (TIA) and minor stroke focuses on stroke prevention. However, evidence demonstrates that many patients experience ongoing residual impairments. Residual impairments post-TIA and minor stroke may affect patients’ quality of life and return to work or social activities. Research priorities of patients, health care professionals and key stakeholders relating to the long-term impact of TIA and minor stroke are unknown.Methods Our objective was to establish the top shared research priorities relating to the long-term impact of TIA and minor stroke through stakeholder-centred consensus. A one-day priority setting consensus meeting took place with representatives from different stakeholder groups in October 2016 (Birmingham, UK). Nominal group technique was used to establish research priorities. This involved three stages: (i) gathering research priorities from individual stakeholders; (ii) interim prioritisation in three subgroups; and (iii) final priority setting.Results The priority setting consensus meeting was attended by 11 stakeholders. The individual stakeholders identified 34 different research priorities. During the interim prioritisation exercise, the three subgroups generated 24 unique research priorities which were discussed as a whole group. Following the final consensus discussion, 11 shared research priorities were unanimously agreed.The 11 research questions encompass a range of categories, including: understanding the existing care patients receive (according to diagnosis and geographical location); exploring what optimal care post-TIA/minor stroke should comprise (identifying and treating impairments, information giving and support groups) and how that care should be delivered (clinical setting and follow-up pathway); impact on family members; and education/training for health care professionals.Conclusions Eleven different research priorities were established through stakeholder-centred consensus. These research questions could usefully inform the research agenda and policy decisions for TIA and minor stroke. Inclusion of stakeholders in setting research priorities is important to increase the relevance of research and reduce research waste.

Public priorities for osteoporosis and fracture research: results from a general population survey

SummaryThis is the first national study of public and patient research priorities in osteoporosis and fracture. We have identified new research areas of importance to members of the public, particularly ‘access to information from health professionals’. The findings are being incorporated into the research strategy of the National Osteoporosis Society.PurposeThis study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda.MethodsAn e-survey to identify topics for research was co-designed with patient representatives. A link to the e-survey was disseminated to supporters of the UK National Osteoporosis Society (NOS) in a monthly e-newsletter. Responders were asked to indicate their top priority for research across four topics (understanding and preventing osteoporosis, living with osteoporosis, treating osteoporosis and treating fractures) and their top three items within each topic. Descriptive statistics were used to describe demographics and item ranking. A latent class analysis was applied to identify a substantive number of clusters with different combinations of binary responses.ResultsOne thousand one hundred eighty-eight (7.4%) respondents completed the e-survey. The top three items overall were ‘Having easy access to advice and information from health professionals’ (63.8%), ‘Understanding further the safety and benefit of osteoporosis drug treatments’ (49.9%) and ‘Identifying the condition early by screening’ (49.2%). Latent class analysis revealed distinct clusters of responses within each topic including primary care management and self-management. Those without a history of prior fracture or aged under 70 were more likely to rate items within the cluster of self-management as important (21.0 vs 12.9 and 19.8 vs 13.3%, respectively).ConclusionThis is the first study of public research priorities in osteoporosis and has identified new research areas of importance to members of the public including access to information. The findings are being incorporated into the research strategy of the National Osteoporosis Society.

I162 Patient Engagement in Research: Defining what Patients want to Know from Research. National Ankylosing Spondylitis Society Experience of Engaging with Patients—Designing the Research Priorities for Patients Living with Ankylosing Spondylitis

I162 Patient Engagement in Research: Defining what Patients want to Know from Research. National Ankylosing Spondylitis Society Experience of Engaging with Patients—Designing the Research Priorities for Patients Living with Ankylosing Spondylitis

Research priorities of patients with neuromuscular disease

Purpose: This paper describes a study in which patients with neuromuscular disease (NMD) were engaged to list top-priorities for scientific research in order to complement the researchers’ agenda. Method: A dialogic model for research agenda setting was used. Interviews, focus groups and expert meetings with patients were held to identify research topics. Research topics were prioritized via a questionnaire. Agendas were integrated in a dialogue meeting with professionals and patients. Results: The research agenda of NMD patients is divided in four research domains, with a total of 24 research topics. These domains include (1) health; (2) quality of life; (3)quality of care and support, and (4) basic issues. Among the research domains highest priority was given to research on health, followed by research on quality of life. Conclusions: Both patients and professionals agreed a proper balance needs to be found between fundamental research and research on symptomatic treatment and quality of life. They concluded that more attention is required for research on the effective treatment of symptoms, quality of life and implementation of knowledge about NMD in regular care.Implications for RehabilitationNeuromuscular diseasePatients with neuromuscular disease (NMD) can effectively participate in a research agenda setting process, contributing with their own perspectives on research topics.Concerning rehabilitation research, patients give priority to research on movement and training (quality of care domain), and on partner support (quality of life domain).The patient-driven agenda reinforces the wide scope on rehabilitation encapsulated in the ICF model and both stipulates the need for more interdisciplinary research, as well as the implementation of research in rehabilitation practice.

Pressure ulcer management and research priorities for patients with spinal cord injury: Consensus opinion from SCI QUERI Expert Panel on Pressure Ulcer Research Implementation

OVERVIEW Pressure ulcers (PUs) are a serious and costly complication for many individuals with reduced mobility and sensation. Some populations, such as those with spinal cord injury and disease (SCI/D), remain at high risk throughout their lifetimes. Clinical observations and research have demonstrated staggering costs and human suffering because of PUs, including profound negative effect on general physical health, socialization, financial status, body image, and level of independence and control [1-2]. The International Pressure Ulcer Prevalence Study from 2006 to 2009 demonstrated a change in PU prevalence in the U.S. healthcare facility population. Overall, PU prevalence was slightly lower in 2009 than in 2006, but prevalence of suspected deep-tissue injuries (DTIs) increased during the same period [3]. Further investigation into the cause of these changes is warranted. DTI diagnosis frequency may have been affected by the addition of suspected DTI to the revised National Pressure Ulcer Advisory Panel (NPUAP) staging definitions in 2007 and rule changes for Centers for Medicare and Medicaid reimbursement. Consideration of current evidence-based practice (EBP) is vitally important in the development and implementation of prevention, treatment, and rehabilitation strategies for PUs. A wealth of basic science is available, and early clinical trials are being carried out in the field of PU research; many of these trials were presented at the inaugural International Evidence Based Practice in Wound Care conference in 2006. The focus of the 2nd International Conference on Evidence Based Practice in Wound Care: The Effective Implementation of Pressure Ulcer Clinical Practice Guidelines (held in 2009) was the apparent disconnect between these early-stage research efforts and their implementation as routine clinical practice, as documented in current clinical practice guidelines (CPGs). EBP and expert opinion are frequently combined during the formulation of CPGs. The balance of expert opinion and EBP in a given CPG depends on the maturity and depth of the research base. Currently, there are multiple CPGs for ulcer prevention and treatment, including the Consortium for Spinal Cord Medicine Clinical Practice Guidelines on Pressure Ulcer Prevention and Treatment (SCICPG) [4]. The common goal of these CPGs is to reduce the incidence and prevalence of PUs. Unfortunately, Thomason et al. found that although SCI physicians and nurses generally agreed with the SCICPG recommendations as written, they did not believe that these recommendations were fully implemented in their respective clinical settings. Furthermore, clinical personnel identified lack of knowledge and organizational factors--such as communication difficulties across teams, shifts, and hospital departments--as the biggest barriers to implementing CPGs [5]. The effective selection and implementation of evidence-based guidelines for PU are critically important to improving rehabilitative and lifetime outcomes for people at risk for PU development. Education in the use and implementation of CPGs is an ongoing need. Additionally, a critical need exists to identify the remaining research gaps and pathways to effective implementation of research efforts in clinical practice. An invited expert panel met in Cleveland, Ohio, on June 4, 2009, in conjunction with the 2nd International Conference on Evidence Based Practice in Wound Care, to develop a research agenda based on critical knowledge gaps regarding PUs in individuals with SCI and on implementation of advanced clinical practice. We report a literature-based discussion of the consensus panel conclusions. The meeting was sponsored by the Department of Veterans Affairs (VA) SCI Quality Enhancement Research Initiative (SCI QUERI). The SCI QUERI works closely with the VA's SCI/D Strategic Health Group to identify the critical, time-sensitive issues important for Veterans Health Administration operations as part of the SCI QUERI mission: promotion of patient health, functioning, and quality of life through the implementation of evidence-based methods for enhancing patient self-management and disease prevention in the context of multidisciplinary care. …