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成年尿道下裂男性患者的心理社会结局

Psychosocial outcome in adult men born with hypospadias.

作者信息

Örtqvist L, Andersson M, Strandqvist A, Nordenström A, Frisén L, Holmdahl G, Nordenskjöld A

机构信息

Department of Women's and Children's Health, Karolinska Institutet, S-171 76, Stockholm, Sweden; Center for Molecular Medicine, Karolinska Institutet, CMM Q2:02, S-17176, Stockholm, Sweden; Department of Pediatric Surgery, Astrid Lindgren Children's Hospital, Karolinska University Hospital, S-17176, Stockholm, Sweden.

Sahlgrenska Academy, Women's and Children's Health, S-413 90, Gothenburg, Sweden; Department of Paediatric Surgery, Queen Silvia's Children's Hospital, S-41685, Gothenburg, Sweden.

出版信息

J Pediatr Urol. 2017 Feb;13(1):79.e1-79.e7. doi: 10.1016/j.jpurol.2016.08.008. Epub 2016 Sep 9.

DOI:10.1016/j.jpurol.2016.08.008
PMID:28087231
Abstract

INTRODUCTION

Hypospadias, which is a surgically treated congenital malformation of the male urethra, may have a negative impact on quality of life. This aspect has previously been subject to limited research. This study examined the long-term psychosocial outcome of a large cohort of adult males born with hypospadias.

OBJECTIVE

The purpose of this case-control study was to assess a possible negative influence on the psychosocial outcome in adult males with hypospadias.

STUDY DESIGN

Males with hypospadias treated in Sweden and aged ≥18 years old participated in this follow-up study. Age-matched men and university students were recruited as controls. The participants answered a questionnaire designed to reflect the subjective quality of life, social factors, need of support and follow-up, and the perceived impact of the disease upon upbringing. It also looked at the validated Psychological General Well-Being (PGWB) questionnaire and Relationship Questionnaire (RQ).

RESULTS AND DISCUSSION

A total of 167 patients (median age 34 years, 63% distal, 24% mid, and 13% proximal hypospadias) and 169 controls (median age 33 years) participated in the study. Patients had their first operation at 4 years of age (median) and the median follow-up time was 29 years following the first surgery. Men with hypospadias had a comparable total quality of life level with a mean total PGWB score of 82 (normal range 78-83) compared with 85.6 in controls. Scores on wellbeing and vitality were lower, even if the differences were small. Hypospadias did not affect marital status, presence of children in the family, frequency of employment or experience of bullying. These men more often lived at home with their parents (P=0.001) and had a lower level of education (P=0.004), even if the educational level in both patients and controls was high compared with the general Swedish population. Patients with proximal hypospadias were shorter compared with controls (P=0.003), which was consistent with the prenatal growth restriction associated with hypospadias. The group with proximal hypospadias expressed a greater need for medical (45.5%) follow-up compared with mid (28.2%) and distal (18.1%) cases (P=0.001). Patients with proximal hypospadias tended to avoid close relationships because of fear of being hurt.

CONCLUSIONS

The findings suggested that patients treated for hypospadias have a good HRQoL, can be expected to have a normal psychosocial life, and marry and have children. Repeated follow-up and psychological support during childhood/adolescence is however of great importance for patients with more proximal hypospadias.

摘要

引言

尿道下裂是一种需手术治疗的男性尿道先天性畸形,可能会对生活质量产生负面影响。此前这方面的研究有限。本研究调查了一大群患有尿道下裂的成年男性的长期心理社会结局。

目的

本病例对照研究的目的是评估尿道下裂对成年男性心理社会结局可能产生的负面影响。

研究设计

在瑞典接受治疗且年龄≥18岁的尿道下裂男性参与了这项随访研究。招募年龄匹配的男性和大学生作为对照。参与者回答了一份问卷,该问卷旨在反映主观生活质量、社会因素、支持和随访需求以及疾病对成长的感知影响。研究还采用了经过验证的心理总体幸福感(PGWB)问卷和人际关系问卷(RQ)。

结果与讨论

共有167例患者(中位年龄34岁,63%为远端尿道下裂,24%为中段尿道下裂,13%为近端尿道下裂)和169名对照者(中位年龄33岁)参与了研究。患者首次手术年龄为4岁(中位值),首次手术后的中位随访时间为29年。尿道下裂男性的总体生活质量水平与对照组相当,心理总体幸福感平均总分为82分(正常范围78 - 83分),而对照组为85.6分。幸福感和活力得分较低,尽管差异较小。尿道下裂不影响婚姻状况、家庭中子女的存在、就业频率或受欺凌经历。这些男性更多地与父母同住(P = 0.001)且教育水平较低(P = 0.004),尽管患者和对照组的教育水平与瑞典普通人群相比都较高。近端尿道下裂患者比对照组矮(P = 0.003),这与尿道下裂相关的产前生长受限一致。与中段(28.2%)和远端(18.1%)尿道下裂患者相比,近端尿道下裂组对医学随访的需求更大(45.5%)(P = 0.001)。近端尿道下裂患者由于害怕受伤往往避免亲密关系。

结论

研究结果表明,接受尿道下裂治疗的患者具有良好的健康相关生活质量,可以预期拥有正常的心理社会生活、结婚生子。然而,对于近端尿道下裂患者,在童年/青少年时期进行反复随访和心理支持非常重要。

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