Malignant upper urinary tract obstruction in cancer patients: A systematic review.

Objective: To systematically summarise the current clinical evidence for de novo malignant upper urinary tract obstruction treatment with a focus on standards of reporting, patient outcomes and future research needs. Methods: This review protocol was published via PROSPERO (CRD42022341588). OVID MEDLINE (R), EMBASE, Cochrane Central Register of Controlled Trials-CENTRAL were searched up to June 2022 in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses. Prospective and retrospective studies were included. Results: Of 941 articles identified, 82 with 8796 patients were eligible for inclusion.Most studies in the published literature are retrospective and investigate heterogenous malignancies. Percutaneous nephrostomy and ureteric stenting are the most studied interventions. Few studies describe the outcomes from no intervention or investigate patient perspectives. Overall reported median survival after intervention was around 11.7 months. A lack of standardised reporting of outcomes was evident. Conclusions: Malignant upper urinary tract obstruction is an important clinical condition affecting patients globally. Overall survival after intervention appears poor however the current evidence base has significant limitations due to studies of low methodological quality and the lack of a standardised framework for reporting outcomes.We have provided a pragmatic framework for future studies based on the review to ensure a uniform methodology is utilised moving forward.

The role of community pharmacy in the promotion of continence care: A systematic review.

OBJECTIVES: Community pharmacies are convenient healthcare settings which provide a wide range of services in addition to medicine supply. Continence care is an area where there is an opportunity for the implementation of new innovations to improve clinical and service outcomes. The objective was to systematically evaluate evidence for the effectiveness, safety, acceptability and key determinants of interventions for the promotion and implementation of continence care in the community pharmacy setting. METHODS: The protocol was registered in the International Prospective Register of Systematic Reviews database (PROSPERO: CRD42022322558). The databases Medline, Embase, PsycINFO and CINAHL were searched and supplemented by grey literature searches, according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses checklist. In total, 338 titles and abstracts were screened, 20 studies underwent full-text screening and four studies met the inclusion criteria and underwent quality assessment. The results are reported narratively due to the heterogeneity of study designs. RESULTS: There was some evidence for the effectiveness of interventions, resulting in increased provision of consumer self-help advice and materials, referrals to other care providers, and an increase in staff knowledge and confidence in continence care. Evidence was inconclusive for clinical outcomes due to small sample sizes and poor follow-up rates. Acceptability of interventions to both pharmacy staff and consumers was generally positive with some frustrations with reimbursement procedures and time constraints. Facilitators of a successful pharmacy-based continence service are likely to include staff training, high-quality self-care resources, increased public awareness, and the establishment of effective referral pathways and appropriate reimbursement (of service providers). CONCLUSIONS: There is a paucity of evidence regarding the contribution of the community pharmacy sector to continence care. The development of a new pharmacy bladder and bowel service should involve patients, healthcare professionals and policy stakeholders to address the potential barriers and build upon the facilitators identified by this review. PATIENT SUMMARY: We identified research that had explored how community pharmacy (chemist) personnel might support people with continence problems (e.g. bladder and bowel leakage). Only four studies were identified, however, they reported that training for pharmacy personnel and providing self-help advice about continence can be successful and was well-received by patients.

Further development and validation of the Multimorbidity Treatment Burden Questionnaire (MTBQ).

OBJECTIVES: To undertake further psychometric testing of the Multimorbidity Treatment Burden Questionnaire (MTBQ) and examine whether reversing the scale reduced floor effects. DESIGN: Survey. SETTING: UK primary care. PARTICIPANTS: Adults (≥18 years) with three or more long-term conditions randomly selected from four general practices and invited by post. MEASURES: Baseline survey: sociodemographics, MTBQ (original or version with scale reversed), Treatment Burden Questionnaire (TBQ), four questions (from QQ-10) on ease of completing the questionnaires. Follow-up survey (1-4 weeks after baseline): MTBQ, TBQ and QQ-10. Anonymous data collected from electronic GP records: consultations (preceding 12 months) and long-term conditions. The proportion of missing data and distribution of responses were examined for the original and reversed versions of the MTBQ and the TBQ. Intraclass correlation coefficient (ICC) and Spearman's rank correlation (Rs) assessed test-retest reliability and construct validity, respectively. Ease of completing the MTBQ and TBQ was compared. Interpretability was assessed by grouping global MTBQ scores into 0 and tertiles (>0). RESULTS: 244 adults completed the baseline survey (consent rate 31%, mean age 70 years) and 225 completed the follow-up survey. Reversing the scale did not reduce floor effects or data skewness. The global MTBQ scores had good test-retest reliability (ICC for agreement at baseline and follow-up 0.765, 95% CI 0.702 to 0.816). Global MTBQ score was correlated with global TBQ score (Rs 0.77, p<0.001), weakly correlated with number of consultations (Rs 0.17, p=0.010), and number of different general practitioners consulted (Rs 0.23, p<0.001), but not correlated with number of long-term conditions (Rs -0.063, p=0.330). Most participants agreed that both the MTBQ and TBQ were easy to complete and included aspects they were concerned about. CONCLUSION: This study demonstrates test-retest reliability and ease of completion of the MTBQ and builds on a previous study demonstrating good content validity, construct validity and internal consistency reliability of the questionnaire.

Series: Public engagement with research. Part 2: GPs and primary care researchers working inclusively with minoritised communities in health research to help address inequalities.

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies.To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research.Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access.

There is an important need to engage with minoritised communities in primary care researchEngaging diverse communities in research helps produce relevant research to address health inequalities.The exclusion of minoritised communities from research can be addressed by taking action towards more inclusive engagement.

Understanding non-recreational prescription medication-sharing behaviours: a systematic review.

BACKGROUND: Prescription medication sharing refers to the lending or borrowing of prescription medications where the recipient is someone other than the person for whom the prescription is intended. Sharing prescription medication can cause significant harm. Adverse consequences include an increased risk of side effects, delayed health seeking, and severity of disease. Prevalence estimates vary across different populations and people's reasons for, and perceptions of risks from, sharing are poorly understood. AIM: To better understand prescription medication-sharing behaviours and practices - specifically, the prevalence, types of medications, reasons, perceived benefits and risks, and factors associated with medication sharing. DESIGN AND SETTING: This systematic review included primary studies in any setting, focusing on people who engage in medication sharing. METHOD: Electronic databases were searched from inception of databases to February 2023. RESULTS: In total, 19 studies were included. Prevalence of lifetime sharing ranged from 13% to 78%. All 19 studies reported that analgesics were the most shared, followed by antibiotics (n = 12) and allergy medication (n = 9). Common reasons for sharing were running out of medication (n = 7), cost (n = 7), and emergency (n = 6). Perceived benefits included resolution of the problem and convenience. Perceived risks included adverse drug reactions and misdiagnosis. Characteristics associated with sharing included age, female sex, having asthma, and unused medicines stored at home. CONCLUSION: Findings suggest that medication-sharing behaviour is common and involves a range of medicines for a variety of reasons. Data on the prevalence and predictors of prescription medication sharing are inconsistent. A better understanding of non-modifiable and potentially modifiable behavioural factors that contribute to sharing is needed to support development of effective interventions aimed at mitigating unsafe sharing practices.

Defining usual care comparators when designing pragmatic trials of complex health interventions: a methodology review.

BACKGROUND: Pragmatic trials evaluating complex health interventions often compare them to usual care. This comparator should resemble care as provided in everyday practice. However, usual care can differ for the same condition, between patients and practitioners, across clinical sites and over time. Heterogeneity within a usual care arm can raise methodological and ethical issues. To address these it may be necessary to standardise what usual care entails, although doing so may compromise a trial's external validity. Currently, there is no guidance detailing how researchers should decide the content of their usual care comparators. We conducted a methodology review to summarise current thinking about what should inform this decision. METHODS: MEDLINE, Embase, CINAHL and PsycINFO were searched from inception to January 2022. Articles and book chapters that discussed how to identify or develop usual care comparators were included. Experts in the field were also contacted. Reference lists and forward citation searches of included articles were screened. Data were analysed using a narrative synthesis approach. RESULTS: One thousand nine hundred thirty records were identified, 1611 titles and abstracts screened, 112 full texts screened, and 16 articles included in the review. Results indicated that the content of a usual care comparator should be informed by the aims of the trial, existing care practices, clinical guidelines, and characteristics of the target population. Its content should also be driven by the trial's requirements to protect participants, inform practice, and be methodologically robust, efficient, feasible and acceptable to stakeholders. When deciding the content of usual care, researchers will need to gather information about these drivers, balance tensions that might occur when responding to different trial objectives, and decide how usual care will be described and monitored in the trial. DISCUSSION: When deciding the content of a usual care arm, researchers need to understand the context in which a trial will be implemented and what the trial needs to achieve to address its aim and remain ethical. This is a complex decision-making process and trade-offs might need to be made. It also requires research and engagement with stakeholders, and therefore time and funding during the trial's design phase. TRIAL REGISTRATION: PROSPERO CRD42022307324.

Most UK cardiovascular disease trial protocols feature criteria that exclude ethnic minority participants: a systematic review.

OBJECTIVES: We systematically reviewed UK cardiovascular disease (CVD) randomized controlled trial (RCT) protocols to identify the proportion featuring eligibility criteria that may disproportionately exclude ethnic minority (EM) participants. METHODS: We searched MEDLINE, Embase, and Cochrane Library databases, January 2014-June 2022, to identify UK CVD RCT protocols. We extracted nonclinical eligibility criteria from trial protocols and inductively categorized the trials by their language, consent, and broad (ambiguous) criteria. Findings are narratively reported. RESULTS: Of the seventy included RCT protocols, most (87.1%; 61/70) mentioned consent within the eligibility criteria, with more than two-thirds (68.9%; 42/61) indicating a requirement for 'written' consent. Alternative consent pathways that can aid EM participation were absent. English language requirement was present in 22.9% (16/70) of the studies and 37.1% (26/70) featured broad criteria that are open to interpretation and subject to recruiter bias. Only 4.3% (3/70) protocols mentioned the provision of translation services. CONCLUSION: Most UK CVD trial protocols feature eligibility criteria that potentially exclude EM groups. Trial eligibility criteria must be situated within a larger inclusive recruitment framework, where ethnicity is considered alongside other intersecting and disadvantaging identities.

World Cafés as a participatory approach to understanding research agendas in primary care with underserved communities: reflections, challenges and lessons learned.

BACKGROUND: Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minoritised ethnic groups are often underserved by research and services. They experience health inequalities and face significant barriers to accessing health services. It is recognised that new approaches are needed to reach underserved communities and make research more relevant. The purpose of this work was to utilise World Cafés, a participatory method, to explore research agendas with diverse communities. METHODS: Two World Cafés were conducted as research agenda setting activities with individuals from minoritised ethnic communities in Bristol, UK. World Café 1 explored Black and Asian women's perspectives about supporting mental health. World Café 2 with men from the Somali community, focused on prostate cancer. Community members co-developed the focus and questions of each World Café and were also instrumental in recruiting individuals to the sessions and facilitating discussions, including translation. Audio and written records were made of the discussions and from these key issues about each topic were identified, and a visual representation of the discussion was also generated. These were shared with participants to check for accuracy. RESULTS: Community members identified a range of issues that are important to them in relation to mental health and prostate cancer, including barriers to help seeking and accessing primary and secondary care, ideas for service improvements and a need for health information that is accessible and culturally relevant. CONCLUSIONS: World Cafés are a flexible method that can be successfully adapted for research agenda setting with individuals from minoritised ethnic communities. The role of community members in co-developing the focus of sessions, recruiting community members and co-facilitating sessions is crucial to this success. The discussions at both World Cafés provided a rich insight into the experiences of participants in relation to the topics mental health and prostate cancer and identified issues that are important to these communities that will be followed-up with communities, researchers and clinicians to co-develop research and service improvement strategies.

People from minoritised ethnic groupsgroups can have difficulty getting health care. They may also be left out of health research. There is a need to include a more diverse group of people in health research. World Cafés are an accessible way to listen to people by getting them to talk to each other about different questions and topics.We did this work to see if World Cafés are a helpful way to talk to people from minoritised ethnic groups about health. We wanted to learn what things are important to people around mental health and prostate cancer. We also wanted to see if designing and running the World Café with people from the same communities as people taking part in the World Cafés is a good way to do this. We worked together with people from racial and ethnic minorities to: Choose questions and topics, Ask people to take part Get people talking and write down what was said We learned that planning and running World Cafés with people from the same communities as the people taking part was very helpful. The people taking part in the World Cafés said that it can be difficult to get help and information about their health. They gave lots of reasons for this. They also had ideas to improve healthcare.Now that we have this information, we will work with the people who took part in and helped run the World Cafés, along with, doctors and researchers to take their ideas for improvements forwards.

Comparing Research Priority-Setting Partnerships for Older Adults Across International Health Care Systems: A Systematic Review.

OBJECTIVES: Priority setting partnerships (PSPs) attempt to shape the research agenda to address the needs of local populations of interest. We reviewed the PSPs for older adults, with a focus on exemplar health care systems: United Kingdom (UK; publicly funded), United States (private health insurance-based), South Korea (national health insurance-based), and Africa (out-of-pocket). DESIGN: Systematic review. SETTING AND PARTICIPANTS: We searched databases and sources (January 2011-October 202l; updated in February 2023) for PSPs of older adults' health care. METHODS: Based on the British geriatric medicine curriculum, we extracted and categorized the PSP topics by areas and the research priorities by themes, and generated evidence maps depicting and comparing the research gaps across the systems. We evaluated PSP quality using the Nine Common Themes of Good Clinical Practice. RESULTS: We included 32 PSPs (United Kingdom: n = 25; United States: n = 7; South Korea and Africa: n = 0) and identified priorities regarding 27 conditions or service arrangements in the United Kingdom and 9 in the United States (predominantly in neurology/psychiatry). The UK priorities focused on treatments and interventions whereas the US on prognostic/predictive factors. There were notable research gaps within the existing PSPs, including common geriatric conditions like continence and frailty. The PSP quality evaluation revealed issues around lacking inclusion of ethnic minorities. CONCLUSIONS AND IMPLICATIONS: Research priorities for older adult health care vary internationally, but certain health care systems/countries have no available PSPs. Where PSPs are available, fundamental aspects of geriatric medicine have not been included. Future researchers should conduct prioritizations in different countries, focus on core geriatric syndromes, and ensure the inclusion of all relevant stakeholder groups.

Treatment burden in multiple long-term conditions: a mixed-methods study protocol.

BACKGROUND: Treatment burden represents the work patients undertake because of their health care, and the impact of that effort on the patient. Most research has focused on older adults (aged >65 years) with multiple long-term conditions (multimorbidity) (MLTC-M), but there are now more younger adults (aged 18-65 years) living with MLTC-M and they may experience treatment burden differently. Understanding experiences of treatment burden, and identifying those most at risk of high treatment burden, are important for designing primary care services to meet their needs. AIM: To understand the treatment burden associated with MLTC-M, for people aged 18-65 years, and how primary care services affect this burden. DESIGN & SETTING: Mixed-methods study in up to 33 primary care practices in two UK regions. METHOD: The following two approaches will be used: (i) in-depth qualitative interviews with adults living with MLTC-M (approximately 40 participants) to understand their experiences of treatment burden and the impact of primary care, with a think-aloud aspect to explore face validity of a novel short treatment burden questionnaire (STBQ) for routine clinical use in the initial 15 interviews; (ii) cross-sectional patient survey (approximately 1000 participants), with linked routine medical record data to examine the factors associated with treatment burden for people living with MLTC-M, and to test the validity of STBQ. CONCLUSION: This study will generate in-depth understanding of the treatment burden experienced by people aged 18-65 years living with MLTC-M, and how primary care services affect this burden. This will inform further development and testing of interventions to reduce treatment burden, and potentially influence MLTC-M trajectories and improve health outcomes.

Non-pharmacological interventions for the management of perinatal anxiety in primary care: a meta-review of systematic reviews.

BACKGROUND: Perinatal anxiety (PNA), anxiety that occurs during pregnancy and/or up to 12 months postpartum, is estimated to affect up to 21% of women, and may impact negatively on mothers, children, and their families. The National Institute for Health and Care Excellence (NICE) has called for further research around non-pharmacological interventions in primary care for PNA. AIM: To summarise the available international evidence on non-pharmacological interventions for women with PNA in a primary care population. DESIGN & SETTING: A meta-review of systematic reviews (SRs) with narrative synthesis was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance. METHOD: Systematic literature searches were conducted in 11 health-related databases up to June 2022. Titles, abstracts, and full-text articles were dual-screened against pre-defined eligibility criteria. A variety of study designs were included. Data were extracted about study participants, intervention design, and context. Quality appraisal was performed using the AMSTAR 2 tool (A MeaSurement Tool to Assess systematic Reviews). A patient and public involvement group informed and contributed towards this meta-review. RESULTS: Twenty-four SRs were included in the meta-review. Interventions were grouped into the following six categories for analysis purposes: psychological therapies; mind-body activities; emotional support from healthcare professionals (HCPs); peer support; educational activities; and alternative or complementary therapies. CONCLUSION: In addition to pharmacological and psychological therapies, this meta-review has demonstrated that there are many more options available for women to choose from that might be effective to manage their PNA. Evidence gaps are present in several intervention categories. Primary care clinicians and commissioners should endeavour to provide patients with a choice of these management options, promoting individual choice and patient-centred care.

Patient and public involvement in implementation of evidence-based guidance for musculoskeletal conditions: a scoping review of current advances and gaps.

Advances in musculoskeletal (MSK) research have been successfully curated into widely endorsed evidence-based recommendations and guidelines. However, there continues to exist significant variations in care and quality of care, and the global health and socio-economic burdens associated with MSK conditions continues to increase. Limited accessibility, and applicability of guideline recommendations have been suggested as contributory factors to less than adequate guideline implementation. Since patient and public involvement (PPI) is being credited with increasing relevance, dissemination and uptake of MSK research, the success of guidelines implementation strategies may also be maximised through increasing opportunities for PPI input. We therefore conducted a scoping review of literature to explore PPI in implementation of evidence-based guidance for MSK conditions. A comprehensive search was used to identify relevant literature in three databases (Medline, Embase, Cinahl) and two large repositories (WHO, G-IN), supplemented by grey literature search. Eligibility was determined with criteria established a priori and narrative synthesis was used to summarise PPI activities, contexts, and impact on implementation of MSK related evidence-based guidance across ten eligible studies (one from a low-and middle-income country LMIC). A prevalence of low-level PPI (mainly consultative activities) was found in the current literature and may partly account for current experiences of significant variations and quality of care for MSK patients. The success of PPI in MSK research may be lessened by the oversight of PPI in implementation. This has implications for both high- and low-resource healthcare systems, especially in LMICs where evidence is limited. Patient and public partnership for mobilising knowledge, maximising guideline uptake, and bridging the research-practice gap particularly in low resource settings remain important and should extend beyond PPI in research and guideline dissemination activities only. This review is a clarion call to stakeholders, and all involved, to transform PPI in MSK research into real world benefits through implementation approaches underpinned by patient and public partnerships. We anticipate that this will enhance and drive quality improvements in MSK care with patients and for patients across health and care settings.

Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups-practical guidance to support better practice.

Randomised trials, especially those intended to directly inform clinical practice and policy, should be designed to reflect all those who could benefit from the intervention under test should it prove effective. This does not always happen. The UK National Institute for Health and Care Research (NIHR) INCLUDE project identified many groups in the UK that are under-served by trials, including ethnic minorities.This guidance document presents four key recommendations for designing and running trials that include the ethnic groups needed by the trial. These are (1) ensure eligibility criteria and recruitment pathway do not limit participation in ways you do not intend, (2) ensure your trial materials are developed with inclusion in mind, (3) ensure staff are culturally competent and (4) build trusting partnerships with community organisations that work with ethnic minority groups. Each recommendation comes with best practice advice, public contributor testimonials, examples of the inclusion problem tackled by the recommendation, or strategies to mitigate the problem, as well as a collection of resources to support implementation of the recommendations.We encourage trial teams to follow the recommendations and, where possible, evaluate the strategies they use to implement them. Finally, while our primary audience is those designing, running and reporting trials, we hope funders, grant reviewers and approvals agencies may also find our guidance useful.

Factors that influence women's engagement with breastfeeding support: A qualitative evidence synthesis.

Breastfeeding is an integral part of early childhood interventions as it can prevent serious childhood and maternal illnesses. For breastfeeding support programmes to be effective, a better understanding of contextual factors that influence women's engagement and satisfaction with these programmes is needed. The aim of this synthesis is to suggest strategies to increase the level of satisfaction with support programmes and to better match the expectations and needs of women. We systematically searched for studies that used qualitative methods for data collection and analysis and that focused on women's experiences and perceptions regarding breastfeeding support programmes. We applied a maximum variation purposive sampling strategy and used thematic analysis. We assessed the methodological quality of the studies using a modified version of the CASP tool and assessed our confidence in the findings using the GRADE-CERQual approach. We included 51 studies of which we sampled 22 for in-depth analysis. Our sampled studies described the experiences of women with formal breastfeeding support by health care professionals in a hospital setting and informal support as for instance from community support groups. Our findings illustrate that the current models of breastfeeding support are dependent on a variety of contextual factors encouraging and supporting women to initiate and continue breastfeeding. They further highlight the relevance of providing different forms of support based on socio-cultural norms and personal backgrounds of women, especially if the support is one-on-one. Feeding decisions of women are situated within a woman's personal situation and may require diverse forms of support.

Evaluation and Treatment in Urology for Nocturia Caused by Nonurological Mechanisms: Guidance from the PLANET Study.

Patients with nocturia are commonly referred to urology clinics, including many for whom a nonurological medical condition is responsible for their symptoms. The PLanning Appropriate Nocturia Evaluation and Treatment (PLANET) study was established to develop practical approaches to equip healthcare practitioners to deal with the diverse causes of nocturia, based on systematic reviews and expert consensus. Initial assessment and therapy need to consider the possibility of one or more medical conditions falling into the "SCREeN" areas of Sleep medicine (insomnia, periodic limb movements of sleep, parasomnias, and obstructive sleep apnoea), Cardiovascular (hypertension and congestive heart failure), Renal (chronic kidney disease), Endocrine (diabetes mellitus, thyroid disease, pregnancy/menopause, and diabetes insipidus), and Neurology. Medical and medication causes of xerostomia should also be considered. Some key indicators for these conditions can be identified in urology clinics, working in partnership with the primary care provider. Therapy of the medical condition in some circumstances lessens the severity of nocturia. However, in many cases there is a conflict between the two, in which case the medical condition generally takes priority on safety grounds. It is important to provide patients with a realistic expectation of therapy and awareness of limitations of current therapeutic options for nocturia. PATIENT SUMMARY: Nocturia is the symptom of waking at night to pass urine. Commonly, this problem is referred to urology clinics. However, in some cases, the patient does not have a urological condition but actually a condition from a different speciality of medicine. This article describes how best the urologist and the primary care doctor can work together to assess the situation and make sensible and safe treatment suggestions. Unfortunately, there is sometimes no safe or effective treatment choice for nocturia, and treatment needs to focus instead on supportive management of symptoms.

Identifying potential barriers and solutions to patient partner compensation (payment) in research.

Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient partners with compensation (or payment) for their contributions. However, we have noted a gap in resources that identify and address barriers to compensating patient partners (no matter the size, degree or length of their engagement). In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles. Based on our experiences as individuals who live with chronic conditions and are patient partners, and those who are researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture of research teams, preconceived beliefs about the skills and abilities of patient partners, and expectations placed on patient partners. We demonstrate these barriers with real life examples and we offer some solutions. To further demonstrate these barriers, we ask readers to reflect on some scenarios that present realistic parallel situations to those that patient partners face. The intention is to illustrate, through empathy or putting yourself in someone else's shoes, how we might all do better with respect to institutional barriers related to patient partner compensation. Last, we issue a call to action to share resources and identify actions to overcome these barriers from which we will create an online resource repository.

Research teams that engage patients as partners sometimes provide compensation or payment to these patient partners for their contributions. There does not seem to be many resources that identify and tackle barriers to compensating patient partners. Based on our experiences as people who live with chronic conditions and who are patient partners, and as researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture on research teams, preconceived beliefs about patient partners' skills and abilities, and expectations placed on patient partners. We illustrate these with real-life scenarios and we offer some solutions. Last, we issue a call to action to the global community that engages patient partners in their research teams to share resources and identify actions to overcome these barriers. By doing so, we can begin to create an online resource repository and help patient partners and researchers focus on working together rather than wasting energy navigating a system that is not well adapted to engaging patient partners.

Association of Sleep Disorders with Nocturia: A Systematic Review and Nominal Group Technique Consensus on Primary Care Assessment and Treatment.

CONTEXT: Sleep disorders affect responsiveness to sensory information and can cause nocturnal polyuria and reduced sleep depth; hence, these are potentially influential in understanding the mechanism of nocturia. OBJECTIVE: To report the systematic review (SR) and expert consensus for primary care management of nocturia in sleep disorders. EVIDENCE ACQUISITION: Four databases were searched from January to April 2020. A total of 1658 titles and abstracts were screened, and 23 studies potentially applicable were included for full-text screening. The nominal group technique (NGT) was used to derive a consensus on recommendations for management using an expert panel with public involvement. EVIDENCE SYNTHESIS: Thirteen studies met the SR inclusion criteria, all of which studied obstructive sleep apnoea (OSA), with ten evaluating the effect of continuous positive airway pressure. The NGT consensus discussed the assessment of OSA with other key sleep disorders, notably insomnia, restless legs syndrome/periodic limb movements of sleep, and parasomnias, including non-rapid eye movement (non-REM) parasomnias and REM sleep behaviour disorder (RBD). The NGT considered that the use of screening questions to reach a clinical diagnosis is a sufficient basis for offering conservative therapy within primary care. Reasons for referral to a sleep clinic are suspected sleep disorder with substantially impaired daytime function despite conservative treatment. Suspected RBD should be referred, and if confirmed, neurology opinion is indicated. Referrals should follow local guidelines. Persisting nocturia is not currently considered an indication for referral to a sleep clinic. CONCLUSIONS: Sleep disorders are potentially highly influential in nocturia, but are often overlooked. PATIENT SUMMARY: People with sleep disorders can experience nocturia due to easy waking or increased bladder filling. We looked at published research, and information was limited to one form of sleep disturbance-obstructive sleep apnoea. We assembled a group of experts, to develop practical approaches for assessing and treating nocturia in the potentially relevant sleep disorders.

Assessment and Treatment of Nocturia in Neurological Disease in a Primary Care Setting: Systematic Review and Nominal Group Technique Consensus.

CONTEXT: Neurological disease can affect the rate of urine production and bladder storage function, increasing nocturia severity, with additional risks if mobility or cognition is impaired. OBJECTIVE: To conduct a systematic review (SR) of nocturia in neurological diseases and achieve expert consensus for management in clinics without neurologist input. EVIDENCE ACQUISITION: Four databases were searched from January 2000 to April 2020. A total of 6262 titles and abstracts were screened and 43 studies were included for full-text screening. Eleven of these met the inclusion criteria and two studies were identified through other sources. The nominal group technique (NGT) was used to develop consensus in panel comprising experts and public representation. EVIDENCE SYNTHESIS: Thirteen studies (seven in Parkinson's disease, five in multiple sclerosis) were included, all undertaken in secondary care. Neurological disease severity was incompletely described, and nocturia severity was generally measured subjectively. NGT consensus supported basic neurological assessment, and the use of bladder diaries where neurological impairment permits. Treatments include pelvic-floor muscle training, review of medications, risk mitigation, improving bowel function, therapy for overactive bladder syndrome (if urgency is reported in association with nocturia episodes), treatment of postvoid residual and desmopressin according to licence. Measures to improve mobility and mitigate risk when using the toilet overnight should be considered. Multifactorial issues such as obstructive sleep apnoea and hypoventilation must be considered. CONCLUSIONS: Nocturia in neurological disease is complex and lacks a robust evidence base, with very little research done in the primary care context. Guidance should be pragmatic, with reduction of risk a key requirement, until a multidisciplinary evidence base can be developed. PATIENT SUMMARY: People with a neurological disease can suffer severe sleep disturbance because of the need to pass urine several times overnight (called nocturia). We looked at published research and found very little information to help general practitioners in managing this condition. We assembled a group of experts to develop practical approaches for assessing and treating nocturia in neurological disease.

Implications of Cardiovascular Disease for Assessment and Treatment of Nocturia in Primary Care: Systematic Review and Nominal Group Technique Consensus.

CONTEXT: Heart conditions affect salt and water homeostasis as a consequence of the underlying condition, compensatory processes, and therapy, and can result in nocturnal polyuria. These processes need to be identified as part of a full evaluation of nocturia. OBJECTIVE: To conduct a systematic review of nocturia in cardiovascular disease and achieve expert consensus for primary care management. Primary care was defined as a health care setting in which the expertise did not include specialist cardiology. EVIDENCE ACQUISITION: Four databases were searched from January 2000 to April 2020. A total of 3524 titles and abstracts were screened and 27 studies underwent full-text screening. Of these, eight studies were included in the analysis. The nominal group technique (NGT) was used to achieve consensus among an expert panel incorporating public involvement. EVIDENCE SYNTHESIS: Most studies focused on nocturia related to blood pressure (BP), while one investigated leg oedema. Hypertension, particularly overnight blood pressure above normal, corresponds with higher risk of nocturia. NGT identified fluid and salt overload, nondipping hypertension, and some therapeutic interventions as key nocturia contributors. History taking and examination should identify raised jugular venous pressure/ankle swelling, with relevant investigations including measurement of BP, resting electrocardiogram, and B-type natriuretic peptide. Treatment recommends reducing salt (including substitutes), alcohol and caffeine. Heart failure is managed according to local guidance and controlling fluid intake to 1-2 l daily. If there is no fluid retention, reduce or discontinue diuretics or calcium channel blockers and follow up to reassess the condition. The target clinic blood pressure is 140/90 mm Hg. CONCLUSIONS: Cardiovascular disease and its treatment are influential for understanding nocturia. Management aims to identify and treat heart failure and/or hypertension. PATIENT SUMMARY: People with cardiovascular disease can suffer severe sleep disturbance because of a need to pass urine at night due to increased overnight blood pressure or heart failure. Following a detailed evaluation of the published research, a group of experts recommended practical approaches for assessing and treating these issues.