Patient and Partner Perspectives of Pregnancy-Related Counseling and Information Needs in Women With Kidney Disease: An Australian National Survey.

Introduction: The experiences and information needs for reproductive health counseling in women with chronic kidney disease (CKD) are poorly defined, despite the known importance of pregnancy planning in this higher-risk cohort. Methods: Australian adult women with CKD and their partners or family members completed a consumer codesigned survey about experiences of and preferences for pregnancy-related counseling, support, and education. Data were analyzed descriptively and with qualitative content analysis of free-text responses. Results: Responses were received from 102 women (CKD, n = 60; dialysis, n = 11; transplant, n = 26; unsure, n = 5 ) and 17 partners/family members. Pregnancy-related discussions were initiated mostly by women themselves (60.0%) compared to nephrologists (26.7%), and only after conception in 14.7%. Women found pregnancy-related discussions satisfactory (68.0%) and useful (50.7%) but also stressful (66.7%), with only 54.7% feeling in control of decision-making. Information deficits and quality, preformed decisions, clinician-patient disconnect, and burden of decision-making contributed to usefulness and outcomes of pregnancy-related counseling. Women received insufficient information about contraception (not provided in 35.2% of cases), medication safety (40.9%), fetal complications (33.8%) and emotional and psychological impact of pregnancy (73.2%). Women preferred counseling from nephrologists (86.4%), face-to-face settings (79.6%), websites (72.7%), handouts (61.4%), and online support groups (46.6%). High-quality, multiformat information by content experts, peer support, and psychological support were also strongly desired. Conclusion: This study highlights that preconception counseling and information needs of women with CKD are currently not being met. Frameworks and tools to assist patients and clinicians, particularly nephrologists, to initiate and conduct sensitive, useful, and informed shared decision-making (SDM) about pregnancy are urgently needed.

Parenthood With Kidney Failure: Answering Questions Patients Ask About Pregnancy.

Achieving parenthood can be an important priority for women and men with kidney failure. In recent decades, the paradigm has shifted toward greater support of parenthood, with advances in our understanding of risks related to pregnancy and improvements in obstetrical and perinatal care. This review, codesigned by people with personal experience of kidney disease, provides guidance for nephrologists on how to answer the questions most asked by patients when planning for parenthood. We focus on important issues that arise in preconception counseling for women receiving dialysis and postkidney transplant. We summarize recent studies reflecting pregnancy outcomes in the modern era of nephrology, obstetrical, and perinatal care in developed countries. We present visual aids to help clinicians and women navigate pregnancy planning and risk assessment. Key principles of pregnancy management are outlined. Finally, we explore outcomes of fatherhood in males with kidney failure.

Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals.

BACKGROUND: Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational. METHODS: We conducted three workshops involving 105 patients/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease. RESULTS: We identified four themes. 'Navigating the unknown'-patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. 'Wary of added burden'-patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. 'Disillusioned and disconnected'-some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed 'Building motivation and interest'. CONCLUSIONS: Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.

'Knowledge is power': A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology.

Involving consumers (patients, carers and family members) across all stages of research is gaining momentum in the nephrology community. Scientific meetings present a partnership opportunity with consumers for dissemination of research findings. The Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) research collaboration, in partnership with Kidney Health Australia, convened two consumer sessions at the 54th Australian and New Zealand Society of Nephrology Annual Scientific Meeting held in September 2018. The educational objectives, topics and session formats were informed by members of the Better Evidence and Translation-Chronic Kidney Disease Consumer Advisory Board (which at the time comprised 36 consumers from around Australia with varied experience of kidney disease). Patients, health professionals and researchers facilitated and presented at the sessions. In-person and live-streaming attendance options were available, with over 400 total participants across the two sessions. Sessions were also video recorded for dissemination and later viewing. Evaluations demonstrated consumers found the presentations informative, relevant and accessible. Attendees indicated strong interest in participating in similar sessions at future scientific meetings. We propose a framework for partnering with consumers as organisers, facilitators, speakers and attendees at scientific meetings in nephrology.

Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops.

BACKGROUND: There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. METHODS: We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically. RESULTS: Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. CONCLUSIONS: Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.

Drug-Induced Peripheral Neuropathy: A Narrative Review.

BACKGROUND: Peripheral neuropathy is a painful condition deriving from many and varied etiologies. Certain medications have been implicated in the iatrogenic development of Drug Induced Peripheral Neuropathy (DIPN) and include chemotherapeutic agents, antimicrobials, cardiovascular drugs, psychotropic, anticonvulsants, among others. This review synthesizes current clinical concepts regarding the mechanism, common inciting medications, and treatment options for drug-induced peripheral neuropathy. METHODS: The authors undertook a structured search of bibliographic databases for peer-reviewed research literature using a focused review question and inclusion/exclusion criteria. The most relevant and up to date research was included. RESULTS: Drug-induced peripheral neuropathy is a common and painful condition caused by many different and frequently prescribed medications. Most often, DIPN is seen in chemotherapeutic agents, antimicrobials, cardiovascular drugs, psychotropic, and anticonvulsant drugs. Certain drugs exhibit more consistent neuropathic side effects, such as the chemotherapeutic compounds, but others are more commonly prescribed by a larger proportion of providers, such as the statins. DIPN is more likely to occur in patients with concomitant risk factors such as preexisting neuropathy, diabetes, and associated genetically predisposing diseases. DIPN is often difficult to treat, however medications including duloxetine, and gabapentin are shown to reduce neuropathic pain. Advanced techniques of neuromodulation offer promise though further randomized and controlled studies are needed to confirm efficacy. CONCLUSION: Awareness of the drugs covered in this review and their potential for adverse neuropathic effect is important for providers caring for patients who report new onset symptoms of pain, paresthesia, or weakness. Prevention of DIPN is especially important because treatment often proves challenging. While many pharmacologic therapies have demonstrated analgesic potential in the pain caused by DIPN, many patients remain refractive to treatment. More studies are needed to elucidate the effectiveness of interventional, neuromodulating therapies.

Multimodal anesthesia with the addition of methadone is superior to epidural analgesia: A retrospective comparison of intraoperative anesthetic techniques and pain management for 124 pediatric patients undergoing the Nuss procedure.

BACKGROUND: The Nuss procedure corrects pectus excavatum by forceful displacement of the sternum with metal bars. Optimal pain management remains a challenge. Mutimodal anesthesia alleviates pain through blockade of multiple nociceptive and inflammatory pain receptors. METHODS: A retrospective chart review of anesthetic and postoperative mangement of 125 children undergoing the Nuss procedure was conducted. Anesthetic mangement strategies were analyzed in four groups: opioid during general anesthesia (GA), epidural with general anesthesia (Epidural), multimodal anesthesia (MM), and multimodal anesthesia with methadone (MM+M). Data collection included total opioid use (as equivalent milligrams of morphine (Mmg)), pain scores, length of stay (LOS), and adverse effects. RESULTS: Total opioid use varied by group (median, IQR (in Mg)): Epidural 213 [149, 293], GA 179 [134, 298], MM (150 [123, 281]), and MM+M (106 [87, 149]), as did severe pain (in minutes): Epidural (208 [73, 323]), GA (115 [7, 255]), MM (54 [0, 210]), and MM+M (49 [0, 151]). LOS was shortest for the MM+M group (MM+M=3.8+1.0days; MM=4.5+1.3days; GA=4.9+1.4days, Epidural=5.5+2.3days). CONCLUSION: Multimodal anesthesia is associated with less postoperative pain and shorter LOS compared to epidural or traditional anesthetic techniques for the Nuss procedure. Multimodal anesthesia with a single intraoperative dose of methadone was associated with lowest total opioid use, time with uncontrolled pain, and shortest LOS.

Chronic pain in Noonan Syndrome: A previously unreported but common symptom.

Noonan syndrome (NS) is a multiple malformation syndrome characterized by pulmonic stenosis, cardiomyopathy, short stature, lymphatic dysplasia, craniofacial anomalies, cryptorchidism, clotting disorders, and learning disabilities. Eight genes in the RAS/MAPK signaling pathway are implicated in NS. Chronic pain is an uncommon feature. To investigate the prevalence of pain in NS, we distributed a two-part questionnaire about pain among NS individuals at the Third International Meeting on Genetic Syndromes of the Ras/MAPK Pathway. The first part of the questionnaire queried demographic information among all NS participants. The second part was completed by individuals with chronic pain. Questions included musculoskeletal problems and clinical features of pain. Forty-five questionnaires were analyzed; 53% of subjects were female. Mean age was 17 (2-48) years; 47% had a PTPN11 mutation. Sixty-two percent (28/45) of individuals with NS experienced chronic pain. There was a significant relationship between prevalence of pain and residing in a cold climate (P = 0.004). Pain occurred commonly in extremities/joints and head/trunk, but more commonly in extremities/joints (P = 0.066). Subjects with hypermobile joints were more likely to have pain (P = 0.052). Human growth hormone treatment was not statistically significant among subjects without chronic pain (P = 0.607). We conclude that pain is a frequent and under-recognized clinical feature of NS. Chronic pain may be associated with joint hypermobility and aggravated by colder climate. Our study is a preliminary investigation that should raise awareness about pain as a common symptom in children and adults with NS.