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.

Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews.

BACKGROUND: The emergence of patient and public involvement (PPI) in healthcare in the UK can be traced as far back as the 1970s. More recently, campaigns by harmed patients have led to a renewed focus on strengthening PPI. There is a growing awareness of the benefits of PPI in research as well as a need to address power inequities and a lack of diversity and inclusion. This review was undertaken to look at evidence for theories, barriers and enablers in PPI across health, social care and patient safety that could be used to strengthen PPI and address a perceived knowledge and theory gap with PPI in patient safety. METHODS: We searched MEDLINE, EMBASE and PsycINFO from inception to August 2018, using both MeSH and free-text terms to identify published empirical literature. Protocols in PROSPERO were also searched to identify any systematic reviews in progress. The extracted information was analysed using a narrative approach, which synthesises data using a descriptive method. RESULTS: Forty-two reviews were identified and grouped by key outcomes. Twenty-two papers mentioned theory in some form, 31 mentioned equality and diversity (although with no theory mentioned in this area), and only 19 cited equality and diversity as a barrier or enabler. Thirty-four reviews identified barriers and enablers at different organisational levels: personal/individual; attitudes; health professional; roles and expectations; knowledge, information and communication; financing and resourcing; training; general support; recruitment and representation, PPI methods and working with communities and addressing power dynamics. CONCLUSIONS: The review findings suggest that a commitment to PPI and partnership working is dependent on taking a whole system approach. This needs to consider the complex individual and organisational enablers and constraints to this process and address imbalances of power experienced by different groups. Addressing equality and diversity and use of a theory-driven approach to guide PPI are neglected areas. The long tradition of involvement across health and social care can provide considerable expertise in thinking about ways to strengthen approaches to PPI. This is especially important in patient safety, with a much newer tradition of developing PPI than other areas of healthcare.

Black and minority ethnic group involvement in health and social care research: A systematic review.

BACKGROUND: Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research. OBJECTIVES: To characterize and critique the empirical literature on BME-PPI involvement in health and social care research. SEARCH STRATEGY: Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH and free-text terms to identify international empirical literature published between 1990 and 2016. INCLUSION CRITERIA: All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers. DATA EXTRACTION AND SYNTHESIS: Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality-assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach. MAIN RESULTS: Forty-five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase and least in data analysis and interpretation. CONCLUSION: This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.

Predictors of patient self-report of chronic kidney disease: baseline analysis of a randomised controlled trial.

BACKGROUND: Improving the quality of care for patients with vascular disease is a priority. Clinical guidance has emphasised the importance of early identification and active management of chronic kidney disease (CKD) in primary care in order to maintain vascular health. However, awareness of stage 3 CKD amongst patients remains limited. We aimed to identify predictors of patient self-report of CKD to inform tailoring of conversations around CKD in primary care for diverse patient populations. METHODS: We conducted a cross-sectional analysis of baseline data from 436 patients with stage 3 CKD from 24 GP practices taking part in a randomised controlled trial (RCT) evaluating a complex self-management intervention, which aimed to support the maintenance of vascular health in patients with stage 3 CKD. Potential predictors of patient self-report of CKD included demographics, stage of CKD, cardiovascular risk, self-reported co-morbidities, health status, self-management ability, and health service utilisation. RESULTS: Around half (52%, n = 227) of patients did not self-report CKD. Self-report rates did not appreciably differ by practice. Multivariate analysis revealed that female patients (p = 0.004), and patients with stage 3b CKD (p < 0.001), and with higher anxiety levels (p < 0.001), were more likely to self-report CKD. CONCLUSIONS: Self-report of kidney problems by patients on CKD registers was variable and patterned by sociodemographic factors. Although it cannot be assumed that failure to self-report indicates a lack of awareness of CKD, our data do suggest the need for greater consistency in discussions around kidney health, with meaningful and relevant clinical dialogue that is aligned with existing clinical encounters to enable shared decision making and minimise anxiety.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Nocturia and Chronic Kidney Disease: Systematic Review and Nominal Group Technique Consensus on Primary Care Assessment and Treatment.

CONTEXT: Reduced renal function impairs salt and water homeostasis, which can drive nocturnal or 24-h polyuria. Nocturia can arise early in chronic kidney disease (CKD). Evidence-based recommendations can facilitate management outside nephrology clinics. OBJECTIVE: To conduct a systematic review (SR) of nocturia in CKD and achieve expert consensus for management in primary care and in specialist clinics outside nephrology. EVIDENCE ACQUISITION: Four databases were searched from January 2000 to April 2020. A total of 4011 titles and abstracts were screened, and 108 studies underwent full-text screening. Seven studies met the inclusion criteria and two were identified through other sources. Consensus was achieved among an expert panel with public involvement using the nominal group technique (NGT). EVIDENCE SYNTHESIS: Several plausible mechanisms contribute to nocturnal or 24-h polyuria in CKD, but there is little evidence on interventions to improve nocturia. NGT assessment recommendations for nocturia (at least two voids per night) in patients with CKD or at risk of CKD being assessed in a non-nephrology setting are: history (thirst, fluid intake), medication review (diuretics, lithium, calcium channel antagonists, nonsteroidal anti-inflammatory medications), examination (oedematous state, blood pressure), urinalysis (haematuria and albumin/creatinine ratio), blood tests (blood urea, serum creatinine and electrolytes, estimated glomerular filtration rate), and a bladder diary. Renal ultrasound should follow local CKD guidelines. Treatment options include optimising blood pressure control, dietary adjustment to reduce salt intake, fluid advice, and a medication review. Referral to specialist nephrology services should follow local guidelines. CONCLUSIONS: CKD should be considered when evaluating patients with nocturia. The aim of assessment is to identify mechanisms and instigate therapy, but the latter may be more applicable to reducing wider morbidity associated with CKD than nocturia itself. PATIENT SUMMARY: People with kidney disease can suffer severe sleep disturbance because of a need to pass urine overnight. We looked at published research and found some useful information about the underlying mechanisms. A group of experts was able to develop practical approaches for assessing and treating this condition.

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.