PDF(Pubmed)
Abstract：
BACKGROUND: Keratoconus has a significant impact on patients\' quality of life (QoL), from diagnosis to the advanced stages of the disease. The aim of this research was to identify domains of QoL affected by this disease and its treatment.
METHODS: Phone interviews were conducted using a semi-structured interview guide, with patients with keratoconus stratified according to their current treatment. A board of keratoconus experts helped identify the guide\'s main themes.
RESULTS: Thirty-five patients (rigid contact lenses, n = 9; cross-linking, n = 9; corneal ring implants, n = 8; and corneal transplantation, n = 9) were interviewed by qualitative researchers. Phone interviews revealed several QoL domains affected by the disease and its treatments: \"psychological\", \"social life\", \"professional life\", \"financial costs\" and \"student life\". All domains were impacted, independently of the treatment history. Few differences were found between treatment regimens and keratoconus stages. Qualitative analysis enabled the development of a conceptual framework based on Wilson and Cleary\'s model for patient outcomes common to all patients. This conceptual model describes the relationship between patients\' characteristics, their symptoms, their environment, their functional visual impairment and the impact on their QoL.
CONCLUSIONS: These qualitative findings supported the generation of a questionnaire to evaluate the impact of keratoconus and its treatment on patients\' QoL. Cognitive debriefings confirmed its content validity. The questionnaire is applicable for all stages of keratoconus and treatments and may help tracking change over time in regular clinical settings. Psychometric validation is yet to be performed before its use in research and clinical practices.
METHODS: Phone interviews were conducted using a semi-structured interview guide, with patients with keratoconus stratified according to their current treatment. A board of keratoconus experts helped identify the guide\'s main themes.
RESULTS: Thirty-five patients (rigid contact lenses, n = 9; cross-linking, n = 9; corneal ring implants, n = 8; and corneal transplantation, n = 9) were interviewed by qualitative researchers. Phone interviews revealed several QoL domains affected by the disease and its treatments: \"psychological\", \"social life\", \"professional life\", \"financial costs\" and \"student life\". All domains were impacted, independently of the treatment history. Few differences were found between treatment regimens and keratoconus stages. Qualitative analysis enabled the development of a conceptual framework based on Wilson and Cleary\'s model for patient outcomes common to all patients. This conceptual model describes the relationship between patients\' characteristics, their symptoms, their environment, their functional visual impairment and the impact on their QoL.
CONCLUSIONS: These qualitative findings supported the generation of a questionnaire to evaluate the impact of keratoconus and its treatment on patients\' QoL. Cognitive debriefings confirmed its content validity. The questionnaire is applicable for all stages of keratoconus and treatments and may help tracking change over time in regular clinical settings. Psychometric validation is yet to be performed before its use in research and clinical practices.
摘要：
背景：圆锥角膜对患者的生活质量（QoL）有显著影响，从诊断到疾病的晚期。这项研究的目的是确定受这种疾病及其治疗影响的QoL领域。
方法：使用半结构化访谈指南进行电话访谈，根据目前的治疗方法对圆锥角膜患者进行分层。圆锥角膜专家委员会帮助确定了指南的主要主题。
结果：35名患者（刚性隐形眼镜，n=9；交联，n=9；角膜环植入物，n=8;和角膜移植，n=9）接受了定性研究人员的采访。电话采访揭示了受疾病及其治疗影响的几个QoL领域：“心理”，“社交生活”，“职业生活”，“财务费用”和“学生生活”。所有域都受到影响，独立于治疗史。治疗方案和圆锥角膜阶段之间几乎没有差异。定性分析能够开发基于Wilson和Cleary模型的概念框架，用于所有患者共同的患者结果。这个概念模型描述了患者特征之间的关系，他们的症状,他们的环境,他们的功能性视力障碍及其对QoL的影响。
结论：这些定性研究结果支持问卷的生成，以评估圆锥角膜及其治疗对患者生活质量的影响。认知汇报证实了其内容的有效性。问卷适用于圆锥角膜和治疗的所有阶段，可能有助于跟踪常规临床环境中随时间的变化。在将其用于研究和临床实践之前，尚未进行心理测量验证。
方法：使用半结构化访谈指南进行电话访谈，根据目前的治疗方法对圆锥角膜患者进行分层。圆锥角膜专家委员会帮助确定了指南的主要主题。
结果：35名患者（刚性隐形眼镜，n=9；交联，n=9；角膜环植入物，n=8;和角膜移植，n=9）接受了定性研究人员的采访。电话采访揭示了受疾病及其治疗影响的几个QoL领域：“心理”，“社交生活”，“职业生活”，“财务费用”和“学生生活”。所有域都受到影响，独立于治疗史。治疗方案和圆锥角膜阶段之间几乎没有差异。定性分析能够开发基于Wilson和Cleary模型的概念框架，用于所有患者共同的患者结果。这个概念模型描述了患者特征之间的关系，他们的症状,他们的环境,他们的功能性视力障碍及其对QoL的影响。
结论：这些定性研究结果支持问卷的生成，以评估圆锥角膜及其治疗对患者生活质量的影响。认知汇报证实了其内容的有效性。问卷适用于圆锥角膜和治疗的所有阶段，可能有助于跟踪常规临床环境中随时间的变化。在将其用于研究和临床实践之前，尚未进行心理测量验证。
