Relationship satisfaction in adults with phenylketonuria is positively associated with following recommended treatment, having a partner involved in management, and maintaining good health.

IF 1.5 Q4 GENETICS & HEREDITY
Journal of Community Genetics Pub Date : 2023-12-01 Epub Date: 2023-10-06 DOI:10.1007/s12687-023-00667-7
Rachel Sundstrom, Leah Wetherill, Katie Sapp, Molly McPheron, Melissa Lah
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引用次数: 0

Abstract

Rationale: Phenylketonuria (PKU) is a metabolic condition that requires treatment for life. There is increasing evidence that chronic illnesses put strain on relationships and marriages. However, no studies have examined the unique factors that metabolic conditions have on affected individuals and their relationship satisfaction. We surveyed a population of adult patients with PKU and assessed how management, treatment, and lifestyle factors impact their relationship satisfaction.

Purpose: The purpose of our study was to explore whether factors such as involvement of partner in PKU management, impact of challenges unique to PKU (e.g., diet, family planning, mood disturbances), and PKU treatment types were associated with the degree of relationship satisfaction.

Method: We surveyed adult patients with PKU (n = 82) who were either currently in or had previously been in a long-term relationship. We developed a 78-question survey that included unique questions regarding lifestyle, treatment, and management of their PKU in addition to a validated Relationship Assessment Score. Questions included single choice, multiple choice, and 3 open-ended questions.

Results: We found that higher relationship satisfaction was associated with increased partner involvement, increased health, and adherence to recommended PKU treatments. Participants utilizing both diet and pharmaceutical treatment had the highest relationship satisfaction. Finally, participants who reported that their PKU did not contribute to the ending of a previous relationship reported higher relationship satisfaction scores.

Conclusion: This study suggests that involvement of partners in the management and treatment of a chronic illness and adherence to recommended treatments can significantly improve relationship satisfaction.

成人苯丙酮尿症患者的关系满意度与以下推荐治疗、有伴侣参与管理和保持良好健康呈正相关。
理由:苯丙酮尿症是一种需要终生治疗的代谢性疾病。越来越多的证据表明,慢性病会给人际关系和婚姻带来压力。然而,没有研究检查代谢条件对受影响个体及其关系满意度的独特因素。我们调查了一组PKU成年患者,并评估了管理、治疗和生活方式因素如何影响他们的关系满意度。目的:我们研究的目的是探讨伴侣参与PKU管理、PKU特有挑战(如饮食、计划生育、情绪障碍)的影响以及PKU治疗类型等因素是否与关系满意度相关。方法:我们调查了成年PKU(n = 82)目前处于或之前处于长期关系中。我们进行了一项78个问题的调查,除了经过验证的关系评估分数外,还包括关于生活方式、治疗和PKU管理的独特问题。问题包括单选题、多选题和3个开放式问题。结果:我们发现,更高的关系满意度与伴侣参与度的增加、健康状况的改善以及对推荐的PKU治疗的依从性有关。同时采用饮食和药物治疗的参与者关系满意度最高。最后,那些报告自己的北大对前一段关系的结束没有贡献的参与者报告说,他们的关系满意度得分更高。结论:这项研究表明,伴侣参与慢性病的管理和治疗,并坚持推荐的治疗方法,可以显著提高关系满意度。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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