Margriet E. Gosselink , Robin Mooren , Rozemarijn Snoek , Neeltje M.T.H. Crombag , Paul Vos , Mandy G. Keijzer-Veen , Albertien M. van Eerde , A. Titia Lely
{"title":"患者和临床医生对生殖保健和 ADPKD 的看法","authors":"Margriet E. Gosselink , Robin Mooren , Rozemarijn Snoek , Neeltje M.T.H. Crombag , Paul Vos , Mandy G. Keijzer-Veen , Albertien M. van Eerde , A. Titia Lely","doi":"10.1016/j.ekir.2024.08.028","DOIUrl":null,"url":null,"abstract":"<div><h3>Introduction</h3><div>Family planning and reproductive care are essential but complex aspects of lifecycle management for individuals with autosomal dominant polycystic kidney disease (ADPKD), given the potential genetic transmission and pregnancy-related complications. In this qualitative study, we studied the experiences and perspectives of patients with ADPKD and clinicians to identify areas for potential improvement in reproductive lifecycle care.</div></div><div><h3>Methods</h3><div>Focus group discussions (FGDs) were conducted in the Netherlands with patients with ADPKD, both men and women, who had children through varied reproductive choices; and clinicians, including (pediatric) nephrologists, obstetric gynecologists and geneticists. Thematic analysis, utilizing a grounded theory approach, was performed on verbatim transcriptions of recordings, followed by consensus discussions to finalize themes.</div></div><div><h3>Results</h3><div>Nine focus groups involving 31 participants (16 patients and 15 physicians) identified 6 key themes. These included the need for timely and comprehensive information dissemination from puberty on, understanding patient-specific decision-making factors, improving tailored psychosocial guidance and communication, the need for systematic efforts to take care of missed (minor) at-risk patients, addressing inequities in access to care, and improving multidisciplinary collaboration.</div></div><div><h3>Conclusions</h3><div>This study represents the first qualitative study of patient and physician perspectives on reproductive lifecycle care for ADPKD. We present valuable insights into factors influencing patients’ reproductive decision-making, a comprehensive comparison between the perspectives of patients and clinicians on family planning and follow-up care of minors at risk for ADPKD, and recommendations for enhancing overall care quality. Incorporating these insights into clinical care could enhance patient-centered care and foster interdisciplinary collaborations to further improve the quality of reproductive health care services for individuals with ADPKD.</div></div>","PeriodicalId":17761,"journal":{"name":"Kidney International Reports","volume":null,"pages":null},"PeriodicalIF":5.7000,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Perspectives of Patients and Clinicians on Reproductive Health Care and ADPKD\",\"authors\":\"Margriet E. Gosselink , Robin Mooren , Rozemarijn Snoek , Neeltje M.T.H. Crombag , Paul Vos , Mandy G. Keijzer-Veen , Albertien M. van Eerde , A. Titia Lely\",\"doi\":\"10.1016/j.ekir.2024.08.028\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Introduction</h3><div>Family planning and reproductive care are essential but complex aspects of lifecycle management for individuals with autosomal dominant polycystic kidney disease (ADPKD), given the potential genetic transmission and pregnancy-related complications. In this qualitative study, we studied the experiences and perspectives of patients with ADPKD and clinicians to identify areas for potential improvement in reproductive lifecycle care.</div></div><div><h3>Methods</h3><div>Focus group discussions (FGDs) were conducted in the Netherlands with patients with ADPKD, both men and women, who had children through varied reproductive choices; and clinicians, including (pediatric) nephrologists, obstetric gynecologists and geneticists. Thematic analysis, utilizing a grounded theory approach, was performed on verbatim transcriptions of recordings, followed by consensus discussions to finalize themes.</div></div><div><h3>Results</h3><div>Nine focus groups involving 31 participants (16 patients and 15 physicians) identified 6 key themes. These included the need for timely and comprehensive information dissemination from puberty on, understanding patient-specific decision-making factors, improving tailored psychosocial guidance and communication, the need for systematic efforts to take care of missed (minor) at-risk patients, addressing inequities in access to care, and improving multidisciplinary collaboration.</div></div><div><h3>Conclusions</h3><div>This study represents the first qualitative study of patient and physician perspectives on reproductive lifecycle care for ADPKD. We present valuable insights into factors influencing patients’ reproductive decision-making, a comprehensive comparison between the perspectives of patients and clinicians on family planning and follow-up care of minors at risk for ADPKD, and recommendations for enhancing overall care quality. Incorporating these insights into clinical care could enhance patient-centered care and foster interdisciplinary collaborations to further improve the quality of reproductive health care services for individuals with ADPKD.</div></div>\",\"PeriodicalId\":17761,\"journal\":{\"name\":\"Kidney International Reports\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":5.7000,\"publicationDate\":\"2024-11-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Kidney International Reports\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S2468024924019132\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"UROLOGY & NEPHROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Kidney International Reports","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2468024924019132","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
Perspectives of Patients and Clinicians on Reproductive Health Care and ADPKD
Introduction
Family planning and reproductive care are essential but complex aspects of lifecycle management for individuals with autosomal dominant polycystic kidney disease (ADPKD), given the potential genetic transmission and pregnancy-related complications. In this qualitative study, we studied the experiences and perspectives of patients with ADPKD and clinicians to identify areas for potential improvement in reproductive lifecycle care.
Methods
Focus group discussions (FGDs) were conducted in the Netherlands with patients with ADPKD, both men and women, who had children through varied reproductive choices; and clinicians, including (pediatric) nephrologists, obstetric gynecologists and geneticists. Thematic analysis, utilizing a grounded theory approach, was performed on verbatim transcriptions of recordings, followed by consensus discussions to finalize themes.
Results
Nine focus groups involving 31 participants (16 patients and 15 physicians) identified 6 key themes. These included the need for timely and comprehensive information dissemination from puberty on, understanding patient-specific decision-making factors, improving tailored psychosocial guidance and communication, the need for systematic efforts to take care of missed (minor) at-risk patients, addressing inequities in access to care, and improving multidisciplinary collaboration.
Conclusions
This study represents the first qualitative study of patient and physician perspectives on reproductive lifecycle care for ADPKD. We present valuable insights into factors influencing patients’ reproductive decision-making, a comprehensive comparison between the perspectives of patients and clinicians on family planning and follow-up care of minors at risk for ADPKD, and recommendations for enhancing overall care quality. Incorporating these insights into clinical care could enhance patient-centered care and foster interdisciplinary collaborations to further improve the quality of reproductive health care services for individuals with ADPKD.
期刊介绍：
Kidney International Reports, an official journal of the International Society of Nephrology, is a peer-reviewed, open access journal devoted to the publication of leading research and developments related to kidney disease. With the primary aim of contributing to improved care of patients with kidney disease, the journal will publish original clinical and select translational articles and educational content related to the pathogenesis, evaluation and management of acute and chronic kidney disease, end stage renal disease (including transplantation), acid-base, fluid and electrolyte disturbances and hypertension. Of particular interest are submissions related to clinical trials, epidemiology, systematic reviews (including meta-analyses) and outcomes research. The journal will also provide a platform for wider dissemination of national and regional guidelines as well as consensus meeting reports.
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