Young people age 14–25 years with chronic kidney disease have been identified as generally having poor health outcomes and are a high-risk group for kidney transplant loss due in part to poor self-management. This raises a key question as to what happens during transition from child to adult services? This paper presents a mixed-method systematic review of health and social care evidence concerning young people with chronic kidney disease transitioning from child to adult health and social care services. Quantitative and qualitative evidence were synthesised in streams followed by an overarching synthesis. Literature searches (2000 to March 2017) were conducted using Pubmed, BioMed Central and Cochrane Library, grey literature sources ZETOC, .gov.uk, third sector organisations, NHS Evidence, SCIE, TRIP, Opengrey. Snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Of 3,125 records screened, 60 texts were included. We found that while strategies to support transition contained consistent messages, they supported the principle of a health-dominated pathway. Well-being is mainly defined and measured in clinical terms and the transition process is often presented as a linear, one-dimensional conduit. Individual characteristics, along with social, familial and societal relationships are rarely considered. Evidence from young people and their families highlights transition as a zone of conflict between independence and dependency with young people feeling powerless on one hand and overwhelmed on the other. We found few novel interventions and fewer that had been evaluated. Studies were rarely conducted by allied health and social care professionals (e.g. renal social workers and psychologists) as part of multi-disciplinary renal teams. We conclude that there is a lack of good evidence to inform providers of health and social care services about how best to meet the needs of this small but vulnerable cohort.

ObjectiveTo determine intervention effects and synthesise qualitative research that explored women with or at high risk of kidney disease experiences of shared decision-making in relation to their reproductive health, family planning options and pregnancy.DesignA systematic review of interventions and a qualitative evidence synthesis.Data sourcesWe searched Cochrane, CINAHL, MEDLINE, Scopus, ProQuest, Elsevier, PubMed, ScienceDirect and Web of Science.Eligibility criteriaShared decision-making interventions and qualitative studies related to reproductive health involving women with or at high risk of kidney disease published from 1980 until January 2021 in English (clinical settings, global perspective).Data extraction and synthesisTitles were screened against the inclusion criteria and full-text articles were reviewed by the whole team. Framework synthesis was undertaken.ResultsWe screened 1898 studies. No evidence-based interventions were identified. 18 qualitative studies were included, 11 kidney disease-specific studies and 7 where kidney disease was a common comorbidity. Women frequently felt unprepared and uninformed about their reproductive options. Conversations with healthcare professionals were commonly described as frustrating and unhelpful, often due to a perceived loss of autonomy and a mismatch in preferences and life goals. Examples of shared decision-making were rare. Kidney disease exacerbated societal expectations of traditional gender roles (eg, wife, mother, carer) including capability to have children and associated factors, for example, parenting, (sexual) relationships, body image and independent living (including financial barriers to starting a family). Local interventions were limited to types of counselling. A new health system model was developed to support new interventions.ConclusionThere is a clear need to establish new interventions, test those already in development and develop new clinical guidance for the management of women with or at high risk of kidney disease in relation to their reproductive health, including options to preserve fertility earlier. Other health conditions with established personalised reproductive care packages, for example, cancer, could be used to benchmark kidney practice alongside the new model developed here.

Note that Jane Noyes is a JAN editor but, in line with usual practice, this paper was subjected to double blind peer review and was edited by another editor.

Aims To identify the needs, experiences and preferences of women with kidney disease in relation to their reproductive health to inform development of shared decision‐making interventions. Design UK‐wide mixed‐methods convergent design (Sep 20–Aug 21). Methods Online questionnaire (n = 431) with validated components. Purposively sampled semi‐structured interviews (n = 30). Patient and public input throughout. Findings Kidney disease was associated with defeminization, negatively affecting current (sexual) relationships and perceptions of future life goals. There was little evidence that shared decision making was taking place. Unplanned pregnancies were common, sometimes influenced by poor care and support and complicated systems. Reasons for (not) wanting children varied. Complicated pregnancies and miscarriages were common. Women often felt that it was more important to be a “good mother” than to address their health needs, which were often unmet and unrecognized. Impacts of pregnancy on disease and options for alternates to pregnancy were not well understood. Conclusion The needs and reproductive priorities of women are frequently overshadowed by their kidney disease. High‐quality shared decision‐making interventions need to be embedded as routine in a feminized care pathway that includes reproductive health. Research is needed in parallel to examine the effectiveness of interventions and address inequalities. Impact We do not fully understand the expectations, needs, experiences and preferences of women with kidney disease for planning and starting a family or deciding not to have children. Women lack the knowledge, resources and opportunities to have high‐quality conversations with their healthcare professionals. Decisions are highly personal and related to a number of health, social and cultural factors; individualized approaches to care are essential. Healthcare services need to be redesigned to ensure that women are able to make informed choices about pregnancy and alternative routes to becoming a parent. Patient or Public Contribution The original proposal for this research came from listening to the experiences of women in clinic who reported unmet needs and detailed experiences of their pregnancies (positive and negative). A patient group was involved in developing the funding application and helped to refine the objectives by sharing their experiences. Two women who are mothers living with kidney disease were co‐opted as core members of the research team. We hosted an interim findings event and invited patients and wider support services (adoption, fertility, surrogacy, education and maternal chronic kidney disease clinics) from across the UK to attend. We followed the UK national standards for patient and public involvement throughout.

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