Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitat...Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitatively examined and needs for care from the young patients and their parents perspective were identified. Methods: Focus group discussions with 26 American-English speaking and nine American-Spanish speaking children and their parents were conducted, transcribed verbatim and subsequently qualitatively analyzed by two independent raters, using an existing coding guideline, based on the multidimensional HrQoL concept and a special software (VERBI-Software MAXQDA 10). Results: A total of 1313 statements for the English-speaking and 447 statements for the Spanish-speaking families were categorized. In the US, the strongest frequency of mention was found for the HrQoL dimension “Social” across respondents, followed by “Treatment” and “Emotion”. Conclusion: Conducting and analyzing data generated from focus groups ensure that young patients’ experiences of disease are represented in the measure of outcomes for use in clinical trials and patient care.展开更多
Purpose: To evaluate the global quality of life (QoL) of survivors with 10-year or more post-transplant, and to identify risk factors that interfere with well-being. Methods: This is a prospective analytic transversal...Purpose: To evaluate the global quality of life (QoL) of survivors with 10-year or more post-transplant, and to identify risk factors that interfere with well-being. Methods: This is a prospective analytic transversal study with 214 survivors of Bone Marrow Transplant (BMT) and 264 healthy people identified among blood donors, treated as the control group, of both sexes, 18 years or older. The protocol includes a demographic-socioeconomic questionnaire, World Health Organization Quality of Life (WHOQOL) and the Karnofsky Performance Status Scale. Results: 53.7% of the survivor group members are satisfied with their QoL. A similar result can be found in the control group (54.2%). Chronological maturity, anxiety, sexual difficulty, and being a provider are factors that interfere negatively in the QoL of male survivors. In female survivors, the risk factors are anxiety, low educational level, not having a stable partner, being a provider, and not being Caucasian. Conclusions: Survivors are as satisfied with their QoL as the control group. QoL is understood as a perceptive process composed of objective (functional and relational capacity) and subjective phenomenon (perceptive composition).展开更多
目的调查陕西省农村老年癌症患者住院期间的常见症状,分析患者症状群的种类及其与生活质量的相关性。方法采用整群抽样法,选取2022年7月至8月在陕西省9家不同医疗机构住院的597例农村老年癌症患者作为调查对象,采用一般资料调查表、中...目的调查陕西省农村老年癌症患者住院期间的常见症状,分析患者症状群的种类及其与生活质量的相关性。方法采用整群抽样法,选取2022年7月至8月在陕西省9家不同医疗机构住院的597例农村老年癌症患者作为调查对象,采用一般资料调查表、中文版安德森症状测评量表(M.D.Anderson symptom inventory,MDASI)、中文版癌症治疗功能评价系统量表(functional assessment of cancer therapy,FACT)进行症状群和生活质量的调查并采用Pearson相关性分析两者相关性。结果陕西省住院的农村老年癌症患者其症状发生率最高的前4个分别为:疲劳(乏力)(75.88%)、胃口变差(75.54%)、睡眠不安(66.83%)、苦恼(66.33%)。情绪是农村老年癌症患者发生率最高的症状困扰(393例,65.83%)。4个症状群分别为胃肠道症状群(恶心、呕吐)、神经相关症状群(瞌睡、口干、身体麻木、健忘、气短)、疲乏症状群(疼痛、疲乏、胃口变差)及情绪症状群(苦恼、悲伤、睡眠不安)。生活质量总分为(55.33±8.46)分,处于中等水平,并与4个症状群呈负相关(均P<0.001)。结论陕西省住院的农村老年癌症患者面临多种症状困扰,症状之间协同形成4个症状群,与生活质量呈负相关,应给予更多关注,实施精准化干预措施,减少症状群负担,以提高其生活质量。展开更多
文摘Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitatively examined and needs for care from the young patients and their parents perspective were identified. Methods: Focus group discussions with 26 American-English speaking and nine American-Spanish speaking children and their parents were conducted, transcribed verbatim and subsequently qualitatively analyzed by two independent raters, using an existing coding guideline, based on the multidimensional HrQoL concept and a special software (VERBI-Software MAXQDA 10). Results: A total of 1313 statements for the English-speaking and 447 statements for the Spanish-speaking families were categorized. In the US, the strongest frequency of mention was found for the HrQoL dimension “Social” across respondents, followed by “Treatment” and “Emotion”. Conclusion: Conducting and analyzing data generated from focus groups ensure that young patients’ experiences of disease are represented in the measure of outcomes for use in clinical trials and patient care.
文摘Purpose: To evaluate the global quality of life (QoL) of survivors with 10-year or more post-transplant, and to identify risk factors that interfere with well-being. Methods: This is a prospective analytic transversal study with 214 survivors of Bone Marrow Transplant (BMT) and 264 healthy people identified among blood donors, treated as the control group, of both sexes, 18 years or older. The protocol includes a demographic-socioeconomic questionnaire, World Health Organization Quality of Life (WHOQOL) and the Karnofsky Performance Status Scale. Results: 53.7% of the survivor group members are satisfied with their QoL. A similar result can be found in the control group (54.2%). Chronological maturity, anxiety, sexual difficulty, and being a provider are factors that interfere negatively in the QoL of male survivors. In female survivors, the risk factors are anxiety, low educational level, not having a stable partner, being a provider, and not being Caucasian. Conclusions: Survivors are as satisfied with their QoL as the control group. QoL is understood as a perceptive process composed of objective (functional and relational capacity) and subjective phenomenon (perceptive composition).
文摘目的调查陕西省农村老年癌症患者住院期间的常见症状,分析患者症状群的种类及其与生活质量的相关性。方法采用整群抽样法,选取2022年7月至8月在陕西省9家不同医疗机构住院的597例农村老年癌症患者作为调查对象,采用一般资料调查表、中文版安德森症状测评量表(M.D.Anderson symptom inventory,MDASI)、中文版癌症治疗功能评价系统量表(functional assessment of cancer therapy,FACT)进行症状群和生活质量的调查并采用Pearson相关性分析两者相关性。结果陕西省住院的农村老年癌症患者其症状发生率最高的前4个分别为:疲劳(乏力)(75.88%)、胃口变差(75.54%)、睡眠不安(66.83%)、苦恼(66.33%)。情绪是农村老年癌症患者发生率最高的症状困扰(393例,65.83%)。4个症状群分别为胃肠道症状群(恶心、呕吐)、神经相关症状群(瞌睡、口干、身体麻木、健忘、气短)、疲乏症状群(疼痛、疲乏、胃口变差)及情绪症状群(苦恼、悲伤、睡眠不安)。生活质量总分为(55.33±8.46)分,处于中等水平,并与4个症状群呈负相关(均P<0.001)。结论陕西省住院的农村老年癌症患者面临多种症状困扰,症状之间协同形成4个症状群,与生活质量呈负相关,应给予更多关注,实施精准化干预措施,减少症状群负担,以提高其生活质量。
