Modersitzki Frank, Pizzi Laura, Grasso Michael, Goldfarb David S
Kidney Stone Prevention Programs, Nephrology Section/111G, DVAMC, New York Harbor VA Medical Center and NYU School of Medicine, 423 E. 23 St., New York, NY, 10010, USA.
Urolithiasis. 2014 Feb;42(1):53-60. doi: 10.1007/s00240-013-0621-4. Epub 2013 Nov 20.
Cystinuria is a genetic cause of recurrent kidney stones which may be more recurrent and larger than more common non-cystine stones. They may have a greater impact on health-related quality of life (HRQoL). We measured this impact by surveying HRQoL in patients with stones, comparing non-cystine stone formers (NCSF) to cystine stone formers (CYSF) and both groups to normative values of the US population. We used SF-36v2 via an internet instrument. CYSF patients were recruited via cystinuria-related websites, two patient advocacy groups, and an active endourology practice. NCSF patients were recruited from the same practice and by email. Total n surveyed with scorable data: 214 CYSF and 81 NCSF. The participants included 128 men and 161 women. The group of CYSF were significantly younger (39 vs. 54 years) and suffered longer from kidney stones (255 vs. 136 months). CYSF patients had significantly more episodes of stones than NCSF patients in the last year (N = 108 CYSF, N = 20 NCSF). More frequent stones in the last year and mental comorbidities most often predicted worse scores in the individual HRQoL domains. However, cystine stone composition was a significant predictor of worse scores only for role emotional. Better scores in all SF-36 domains were associated with greater time since the last kidney stone event. Although kidney stones are often transient, kidney stone formers, regardless of stone composition, have a worse HRQoL than the standard US population, which has a normative score of 50, such as general health (41.2 ± 12.8), bodily pain (46.5 ± 11.8) and mental health (45.1 ± 12.6). CYSF are more frequent and severe stone formers compared with NCSF with a resulting greater, direct impact on the HRQoL of CYSF patients. Whether preventive strategies for cystinuria are being properly utilized by practitioners, and which strategies are most effective, should be established.
胱氨酸尿症是复发性肾结石的一个遗传病因，与更常见的非胱氨酸结石相比，其复发可能更频繁且结石更大。它们可能对健康相关生活质量（HRQoL）产生更大影响。我们通过调查结石患者的HRQoL来衡量这种影响，将非胱氨酸结石形成者（NCSF）与胱氨酸结石形成者（CYSF）进行比较，并将两组与美国人群的标准值进行比较。我们通过网络工具使用SF-36v2。CYSF患者通过与胱氨酸尿症相关的网站、两个患者倡导组织以及一个活跃的腔内泌尿外科诊所招募。NCSF患者从同一诊所和通过电子邮件招募。有可评分数据的调查总数：214名CYSF患者和81名NCSF患者。参与者包括128名男性和161名女性。CYSF组明显更年轻（39岁对54岁），患肾结石的时间更长（255个月对136个月）。在过去一年中，CYSF患者的结石发作次数明显多于NCSF患者（CYSF组N = 108，NCSF组N = 20）。过去一年中更频繁的结石发作和精神合并症最常预示着个体HRQoL领域的得分更差。然而，胱氨酸结石成分仅是角色情感得分更差的一个重要预测因素。所有SF-36领域中更好的得分与自上次肾结石事件以来更长的时间相关。尽管肾结石通常是短暂的，但无论结石成分如何，肾结石形成者的HRQoL都比美国标准人群更差，美国标准人群的标准得分为50分，例如总体健康（41.2±12.8）、身体疼痛（46.5±11.8）和心理健康（45.1±12.6）。与NCSF相比，CYSF是更频繁且更严重的结石形成者，因此对CYSF患者的HRQoL有更大的直接影响。应该确定从业者是否正确使用了胱氨酸尿症的预防策略，以及哪些策略最有效。
