C. Hanson

Dietary and fluid restrictions in CKD: a thematic synthesis of patient views from qualitative studies

BACKGROUNDnManaging the complex fluid and diet requirements of chronic kidney disease (CKD) is challenging for patients. We aimed to summarize patients perspectives of dietary and fluid management in CKD to inform clinical practice and research.nnnSTUDY DESIGNnSystematic review of qualitative studies.nnnSETTING & POPULATIONnAdults with CKD who express opinions about dietary and fluid management.nnnSEARCH STRATEGY & SOURCESnMEDLINE, EMBASE, PsycINFO, CINAHL, Google Scholar, reference lists, and PhD dissertations were searched to Mayxa02013.nnnANALYTICAL APPROACHnThematic synthesis.nnnRESULTSnWe included 46 studies involving 816 patients living in middle- to high-income countries. Studies involved patients treated with facility-based and home hemodialysis (33 studies; 462 patients), peritoneal dialysis (10 studies; 112 patients), either hemodialysis or peritoneal dialysis (3 studies; 73 patients), kidney transplant recipients (9 studies; 89 patients), and patients with non-dialysis-dependent CKD stages 1 to 5 (5 studies; 80 patients). Five major themes were identified: preserving relationships (interference with roles, social limitations, and being a burden), navigating change (feeling deprived, disrupting held truths, breaking habits and norms, being overwhelmed by information, questioning efficacy, and negotiating priorities), fighting temptation (resisting impositions, experiencing mental invasion, and withstanding physiologic needs), optimizing health (accepting responsibility, valuing self-management, preventing disease progression, and preparing for and protecting a transplant), and becoming empowered (comprehending paradoxes, finding solutions, and mastering change and demands).nnnLIMITATIONSnLimited data in non-English languages and low-income settings and for adults with CKD not treated with hemodialysis.nnnCONCLUSIONSnDietary and fluid restrictions are disorienting and an intense burden for patients with CKD. Patient-prioritized education strategies, harnessing patients motivation to stay well for a transplant or to avoid dialysis, and viewing adaptation to restrictions as a collaborative journey are suggested strategies to help patients adjust to dietary regimens in order to reduce their impact on quality of life.

The preferences and perspectives of nephrologists on patients' access to kidney transplantation: a systematic review.

We aimed to describe nephrologists’ attitudes to patients’ access to kidney transplantation. Studies that assessed nephrologists’ perspectives toward patient referral, screening, and eligibility for kidney transplantation were synthesized. Twenty-four studies (n≥4695) were included. Patients with comorbidities, were nonadherent, of older age, ethnic minorities, or low socioeconomic status were less likely to be recommended. Six themes underpinned nephrologists’ perspectives: prioritizing individual benefit and safety, maximizing efficiency, patient accountability, justifying gains, protecting unit outcomes, and reluctance to raise patients’ expectations. Evidence-based guidelines may support systematic and equitable decision-making. Interventions for high-risk or disadvantaged patient populations could reduce disparities in access to transplantation.

Public attitudes and beliefs about living kidney donation: focus group study.

Background With the rising prevalence of end-stage kidney disease worldwide, the proportion of the general community who might subsequently be called upon to consider living related kidney donation is also increasing. Knowledge about the attitudes and beliefs among the general public about living kidney donation is limited. We aimed to describe public perspectives on living kidney donation. Methods Participants were recruited from three states in Australia to participate in 12 focus groups (n=113). Transcripts were analyzed thematically. Results We identified six themes: expected benefits (saving and improving life, societal gain, donor satisfaction, reassurance and control), consciousness of donor risks (compromised health, lifestyle limitations, financial consequences, relationship tensions, devastation), social precariousness (fear of the unknown, exploitative connotation, recipient deservingness, protecting conscience, potential regret), upholding fairness (equal access to transplantation, reciprocity, prevent prejudice, donor safety net), decisional autonomy (body ownership, right to know, valid relationships), and assumed duty of care (facilitate informed decision-making, safeguard against coercion, ensure psychological safety, justifiable risk, objectivity, warranted disclosure). Conclusion The expected benefits for recipients bolster public support for living kidney donor transplantation; however, ethical dilemmas and concerns for the donor instilled ambivalence about living donation. Protecting equity and autonomy, and an implicit trust in health professionals to protect donors and recipients mitigated some of these uncertainties. Developing interventions, practices, and policies that address community skepticism and values may promote awareness and trust in living kidney donation.

Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for Hemodialysis Vascular Access

Vascular access outcomes in hemodialysis are critically important for patients and clinicians, but frequently are neither patient relevant nor measured consistently in randomized trials. A Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop was convened to discuss the development of a core outcome measure for vascular access. 13 patients/caregivers and 46 professionals (clinicians, policy makers, industry representatives, and researchers) attended. Participants advocated for vascular access function to be a core outcome based on the broad applicability of function regardless of access type, involvement of a multidisciplinary team in achieving a functioning access, and the impact of access function on quality of life, survival, and other access-related outcomes. A core outcome measure for vascular access required demonstrable feasibility for implementation across different clinical and trial settings. Participants advocated for a practical and flexible outcome measure with a simple actionable definition. Integrating patients values and preferences was warranted to enhance the relevance of the measure. Proposed outcome measures for function included uninterrupted use of the access without the need for interventions and ability to receive prescribed dialysis, but not access blood flow, which was deemed too expensive and unreliable. These recommendations will inform the definition and implementation of a core outcome measure for vascular access function in hemodialysis trials.

Identifying Outcomes that Are Important to Living Kidney Donors A Nominal Group Technique Study

BACKGROUND AND OBJECTIVESnLiving kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices.nnnDESIGN, SETTING, PARTICIPANTS, & MEASUREMENTSnPrevious donors were purposively sampled from three transplant units in Australia (Sydney and Melbourne) and Canada (Vancouver). In focus groups using the nominal group technique, participants identified outcomes of donation, ranked them in order of importance, and discussed the reasons for their preferences. An importance score was calculated for each outcome. Qualitative data were analyzed thematically.nnnRESULTSnAcross 14 groups, 123 donors aged 27-78 years identified 35 outcomes. Across all participants, the ten highest ranked outcomes were kidney function (importance=0.40, scale 0-1), time to recovery (0.27), surgical complications (0.24), effect on family (0.22), donor-recipient relationship (0.21), life satisfaction (0.18), lifestyle restrictions (0.18), kidney failure (0.14), mortality (0.13), and acute pain/discomfort (0.12). Kidney function and kidney failure were more important to Canadian participants, compared with Australian donors. The themes identified included worthwhile sacrifice, insignificance of risks and harms, confidence and empowerment, unfulfilled expectations, and heightened susceptibility.nnnCONCLUSIONSnLiving kidney donors prioritized a range of outcomes, with the most important being kidney health and the surgical, lifestyle, functional, and psychosocial effects of donation. Donors also valued improvements to their family life and donor-recipient relationship. There were clear regional differences in the rankings.

Patient beliefs and attitudes to taking statins: systematic review of qualitative studies

BACKGROUNDnStatins are effective in preventing cardiovascular disease (CVD) events and are recommended for at-risk individuals but estimated adherence rates are low.nnnAIMnTo describe patients perspectives, experiences, and attitudes towards taking statins.nnnDESIGN AND SETTINGnSystematic review of qualitative studies reporting perspectives of patients on statins.nnnMETHODnPsycINFO, CINAHL, Embase, MEDLINE, and PhD dissertations from inception to 6 October 2016 were searched for qualitative studies on adult patients perspectives on statins. All text and participant quotations were extracted from each article and analysed by thematic synthesis.nnnRESULTSnThirty-two studies involving 888 participants aged 22-93 years across eight countries were included. Seven themes were identified: confidence in prevention (trust in efficacy, minimising long-term catastrophic CVD, taking control, easing anxiety about high cholesterol); routinising into daily life; questioning utility (imperceptible benefits, uncertainties about pharmacological mechanisms); medical distrust (scepticism about overprescribing, pressure to start therapy); threatening health (competing priorities and risks, debilitating side effects, toxicity to body); signifying sickness (fear of perpetual dependence, losing the battle); and financial strain.nnnCONCLUSIONnAn expectation that statins could prevent CVD and being able to integrate the statin regimen in daily life facilitated acceptance of statins among patients. However, avoiding the sick identity and prolonged dependence on medications, uncertainties about the pharmacological mechanisms, risks to health, side effects, costs, and scepticism about clinicians motives for prescribing statins were barriers to uptake. Shared decision making that addresses the risks, reasons for prescribing, patient priorities, and implementing strategies to minimise lifestyle intrusion and manage side effects may improve patient satisfaction and continuation of statins.