Pub Date : 2024-07-16DOI: 10.1007/s11136-024-03720-1
Nancy E Mayo, Mohammad Auais, Ruth Barclay, Joan Branin, Helen Dawes, Ida J Korfage, Kim Sawchuk, Eran Tal, Carole L White, Zain Ayoubi, Ezinne Ekediegwu, Kedar Mate, Lyne Nadeau, Sebastian Rodriguez Duque, Ayse Kuspinar
Introduction: Through interviews with 148 older persons from four countries and in four languages, the content for a 17-item measure of active living was developed. The purpose of this paper is to present further evidence of the extent to which this new measure, Older Persons Active Living (OPAL), is "fit-for-purpose" for measuring the extent of active living at one point in time.
Methods: A cross-sectional study was carried out on a population aged 65 + and living independently, drawn from a participant panel, HostedinCanada, sampling people from Canada, United States, United Kingdom, and Netherlands. The survey instrument comprised the OPAL questionnaire rated on importance and frequency, sociodemographics, and information on physical and mental function. The argument-based approach to validity framed the analyses. Logistic regression, structural equation modeling, ordinary least-squares regression, and correlation were used to generate estimates for parameters underpinning validity evidence.
Results: A total of 1612 people completed the survey, 100 to 400 people across the 6 country-language strata. The proportion of people rating the items as extremely or quite important ranged from 60 to 90%, with no important differences between men and women and few differences between strata. A single-factor structure was supported. The ordinality of the response options justified an additive total score yielding a near normal distribution (mean: 33.1; SD: 11.5; range 0-51). Correlations with other measures of converging constructs were of moderate strength (~ 0.50), and differences across groups known to affect functioning and health were observed, suggesting a Miminal Important Difference (MID) of 6 out of 51.
Conclusion: The results of this study provide evidence that the 17-item OPAL measure is fit for the purpose of estimating the extent to which older persons are living actively at one point in time.
{"title":"Measuring what matters to older persons for active living: part II cross-sectional validity evidence for OPAL measure across four countries.","authors":"Nancy E Mayo, Mohammad Auais, Ruth Barclay, Joan Branin, Helen Dawes, Ida J Korfage, Kim Sawchuk, Eran Tal, Carole L White, Zain Ayoubi, Ezinne Ekediegwu, Kedar Mate, Lyne Nadeau, Sebastian Rodriguez Duque, Ayse Kuspinar","doi":"10.1007/s11136-024-03720-1","DOIUrl":"10.1007/s11136-024-03720-1","url":null,"abstract":"<p><strong>Introduction: </strong>Through interviews with 148 older persons from four countries and in four languages, the content for a 17-item measure of active living was developed. The purpose of this paper is to present further evidence of the extent to which this new measure, Older Persons Active Living (OPAL), is \"fit-for-purpose\" for measuring the extent of active living at one point in time.</p><p><strong>Methods: </strong>A cross-sectional study was carried out on a population aged 65 + and living independently, drawn from a participant panel, HostedinCanada, sampling people from Canada, United States, United Kingdom, and Netherlands. The survey instrument comprised the OPAL questionnaire rated on importance and frequency, sociodemographics, and information on physical and mental function. The argument-based approach to validity framed the analyses. Logistic regression, structural equation modeling, ordinary least-squares regression, and correlation were used to generate estimates for parameters underpinning validity evidence.</p><p><strong>Results: </strong>A total of 1612 people completed the survey, 100 to 400 people across the 6 country-language strata. The proportion of people rating the items as extremely or quite important ranged from 60 to 90%, with no important differences between men and women and few differences between strata. A single-factor structure was supported. The ordinality of the response options justified an additive total score yielding a near normal distribution (mean: 33.1; SD: 11.5; range 0-51). Correlations with other measures of converging constructs were of moderate strength (~ 0.50), and differences across groups known to affect functioning and health were observed, suggesting a Miminal Important Difference (MID) of 6 out of 51.</p><p><strong>Conclusion: </strong>The results of this study provide evidence that the 17-item OPAL measure is fit for the purpose of estimating the extent to which older persons are living actively at one point in time.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141620790","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-15DOI: 10.1007/s11136-024-03718-9
Motolani E Ogunsanya, Ernest Kaninjing, Tanara N Ellis, Daniel J Morton, Andrew G McIntosh, Jian Zhao, Sabrina L Dickey, Darla E Kendzor, Kathleen Dwyer, Mary Ellen Young, Folakemi T Odedina
Purpose: This study examined the health-related quality of life (HRQoL) among ethnically diverse Black men (BM) with prostate cancer (CaP) in the United States.
Methods: A convergent parallel mixed-methods design, employing both qualitative and quantitative research, involved recruiting Black CaP survivors through multiple channels. The target population was native-born BM (NBBM), African-born BM (ABBM), and Caribbean-born BM (CBBM). QoL for all men was assessed using The Functional Assessment Cancer Therapy-Prostate (FACT-P) measure, which includes five domains: physical- (PWB), emotional- (EWB), social-(SWB), and functional-wellbeing (FWB), and a CaP subscale (PCS). A subset of men completed qualitative interviews. Demographic and clinical characteristics were also collected.
Results: Black CaP survivors aged 49-85 participated in the study (n = 108), with a subset (n = 31) completing a qualitative interview. Participants were mainly NBBM (72.2%) and treated with radiotherapy (51.9%). The FACT-P scale total mean score (± SD) was 114 ± 24.1 (theoretical range 0-156), with lower scores reported on the SWB, FWB, and EWB domains. The mixed-methods findings approach included meta-inferences derived from integrating the corresponding quantitative and qualitative data, covering all the domains within the FACT-P.
Conclusion: Black CaP survivors experienced significant burdens that impacted their overall HRQoL. The analysis revealed impacts on physical, social, and emotional well-being, with variations among ethnic groups suggesting the need for culturally tailored interventions. EWB was also profoundly impacted by CaP treatment, with universal emotional burdens emphasized across all groups. Healthcare providers must recognize and address these multifaceted needs to promote better outcomes and HRQoL for Black CaP survivors.
目的:本研究调查了美国不同种族的前列腺癌(CaP)黑人男性(BM)的健康相关生活质量(HRQoL):方法:采用聚合平行混合方法设计,同时运用定性和定量研究,通过多种渠道招募前列腺癌黑人幸存者。目标人群包括土生土长的黑人(NBBM)、非洲裔黑人(ABBM)和加勒比海裔黑人(CBBM)。所有男性的 QoL 均采用 "癌症治疗功能评估-前列腺"(FACT-P)量表进行评估,该量表包括五个领域:身体健康(PWB)、情绪健康(EWB)、社交健康(SWB)、功能健康(FWB)和 CaP 子量表(PCS)。一部分男性完成了定性访谈。此外,还收集了人口统计学和临床特征:年龄在 49-85 岁之间的黑人 CaP 幸存者参与了研究(n = 108),其中一部分(n = 31)完成了定性访谈。参与者主要是 NBBM(72.2%)和接受过放疗的患者(51.9%)。FACT-P 量表的总平均分(± SD)为 114 ± 24.1(理论范围 0-156),其中 SWB、FWB 和 EWB 领域的得分较低。混合方法的研究结果包括通过整合相应的定量和定性数据得出的元推论,涵盖了 FACT-P 的所有领域:黑人 CaP 幸存者经历了影响其整体 HRQoL 的重大负担。分析表明,他们的身体、社会和情感健康都受到了影响,不同种族群体之间存在差异,这表明有必要采取针对不同文化的干预措施。EWB也受到CaP治疗的深刻影响,所有群体都强调了普遍的情感负担。医疗服务提供者必须认识到并解决这些多方面的需求,以促进黑人 CaP 幸存者获得更好的治疗效果和 HRQoL。
{"title":"Health-related quality of life in ethnically diverse Black prostate cancer survivors: a convergent parallel mixed-methods approach.","authors":"Motolani E Ogunsanya, Ernest Kaninjing, Tanara N Ellis, Daniel J Morton, Andrew G McIntosh, Jian Zhao, Sabrina L Dickey, Darla E Kendzor, Kathleen Dwyer, Mary Ellen Young, Folakemi T Odedina","doi":"10.1007/s11136-024-03718-9","DOIUrl":"https://doi.org/10.1007/s11136-024-03718-9","url":null,"abstract":"<p><strong>Purpose: </strong>This study examined the health-related quality of life (HRQoL) among ethnically diverse Black men (BM) with prostate cancer (CaP) in the United States.</p><p><strong>Methods: </strong>A convergent parallel mixed-methods design, employing both qualitative and quantitative research, involved recruiting Black CaP survivors through multiple channels. The target population was native-born BM (NBBM), African-born BM (ABBM), and Caribbean-born BM (CBBM). QoL for all men was assessed using The Functional Assessment Cancer Therapy-Prostate (FACT-P) measure, which includes five domains: physical- (PWB), emotional- (EWB), social-(SWB), and functional-wellbeing (FWB), and a CaP subscale (PCS). A subset of men completed qualitative interviews. Demographic and clinical characteristics were also collected.</p><p><strong>Results: </strong>Black CaP survivors aged 49-85 participated in the study (n = 108), with a subset (n = 31) completing a qualitative interview. Participants were mainly NBBM (72.2%) and treated with radiotherapy (51.9%). The FACT-P scale total mean score (± SD) was 114 ± 24.1 (theoretical range 0-156), with lower scores reported on the SWB, FWB, and EWB domains. The mixed-methods findings approach included meta-inferences derived from integrating the corresponding quantitative and qualitative data, covering all the domains within the FACT-P.</p><p><strong>Conclusion: </strong>Black CaP survivors experienced significant burdens that impacted their overall HRQoL. The analysis revealed impacts on physical, social, and emotional well-being, with variations among ethnic groups suggesting the need for culturally tailored interventions. EWB was also profoundly impacted by CaP treatment, with universal emotional burdens emphasized across all groups. Healthcare providers must recognize and address these multifaceted needs to promote better outcomes and HRQoL for Black CaP survivors.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141617037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-15DOI: 10.1007/s11136-024-03681-5
Runtang Meng, Chen Jiang, Daniel Yee Tak Fong, Igor Portoghese, Yihong Zhu, Karen Spruyt, Haiyan Ma
Objective: This study was to evaluate measurement properties of the Chinese version of the Brief Inventory of Perceived Stress (BIPS-C) and confirm possible solutions for measuring the constructs underlying perceived stress.
Methods: A total of 1356 community residents enrolled and were randomly split into two halves. The first half was used to explore the underlying constructs of the BIPS-C by exploratory graph analysis (EGA) and the second half was used to compare and confirm the constructs by confirmatory factor analysis (CFA).
Results: The EGA identified a one-factor model of the BIPS-C with an accuracy of 99.3%. One-factor, three-factor, second-order, and bifactor models were compared by CFAs. The bifactor model with one general and three specific factors was found to be the most adequate [comparative fit index (CFI) = 0.990; Tucker-Lewis index (TLI) = 0.979; root mean square error of approximation (RMSEA) = 0.058] and was superior to the other models. The related bifactor indices showed a stronger existence of the general factor. The bifactor model of the BIPS-C also showed adequate internal consistency with McDonald's omega and omega subscales ranging from moderate to strong (0.677-0.869).
Conclusion: The BIPS-C demonstrates sufficient measurement properties for assessing general perceived stress.
{"title":"Assessment of psychometric performance for the Chinese version of the Brief Inventory of Perceived Stress integrating exploratory graph analysis and confirmatory factor analysis.","authors":"Runtang Meng, Chen Jiang, Daniel Yee Tak Fong, Igor Portoghese, Yihong Zhu, Karen Spruyt, Haiyan Ma","doi":"10.1007/s11136-024-03681-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03681-5","url":null,"abstract":"<p><strong>Objective: </strong>This study was to evaluate measurement properties of the Chinese version of the Brief Inventory of Perceived Stress (BIPS-C) and confirm possible solutions for measuring the constructs underlying perceived stress.</p><p><strong>Methods: </strong>A total of 1356 community residents enrolled and were randomly split into two halves. The first half was used to explore the underlying constructs of the BIPS-C by exploratory graph analysis (EGA) and the second half was used to compare and confirm the constructs by confirmatory factor analysis (CFA).</p><p><strong>Results: </strong>The EGA identified a one-factor model of the BIPS-C with an accuracy of 99.3%. One-factor, three-factor, second-order, and bifactor models were compared by CFAs. The bifactor model with one general and three specific factors was found to be the most adequate [comparative fit index (CFI) = 0.990; Tucker-Lewis index (TLI) = 0.979; root mean square error of approximation (RMSEA) = 0.058] and was superior to the other models. The related bifactor indices showed a stronger existence of the general factor. The bifactor model of the BIPS-C also showed adequate internal consistency with McDonald's omega and omega subscales ranging from moderate to strong (0.677-0.869).</p><p><strong>Conclusion: </strong>The BIPS-C demonstrates sufficient measurement properties for assessing general perceived stress.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141617069","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: Motherhood affects women's mental health, encompassing aspects of both wellbeing and illbeing. This study investigated stability and change in wellbeing (i.e., relationship satisfaction and positive affect) and illbeing (i.e., depressive and anxiety symptoms) from pregnancy to three years postpartum. We further investigated the mutual and dynamic relations between these constructs over time and the role of genetic propensities in their time-invariant stability.
Data and methods: This four-wave longitudinal study included 83,124 women from the Norwegian Mother, Father, and Child Cohort Study (MoBa) linked to the Medical Birth Registry of Norway. Data were collected during pregnancy (30 weeks) and at 6, 18 and 36 months postpartum. Wellbeing and illbeing were based on the Relationship Satisfaction Scale, the Differential Emotions Scale and Hopkins Symptoms Checklist-8. Genetics were measured by the wellbeing spectrum polygenic index. Analyses were based on random intercept cross-lagged panel models using R.
Results: All four outcomes showed high stability and were mutually interconnected over time, with abundant cross-lagged predictions. The period of greatest instability was from pregnancy to 6 months postpartum, followed by increasing stability. Prenatal relationship satisfaction played a crucial role in maternal mental health postpartum. Women's genetic propensity to wellbeing contributed to time-invariant stability of all four constructs.
Conclusion: Understanding the mutual relationship between different aspects of wellbeing and illbeing allows for identifying potential targets for health promotion interventions. Time-invariant stability was partially explained by genetics. Maternal wellbeing and illbeing develop in an interdependent way from pregnancy to 36 months postpartum.
目的:母性会影响女性的心理健康,包括幸福感和不幸福感两个方面。本研究调查了从怀孕到产后三年期间幸福感(即人际关系满意度和积极情绪)和不幸福感(即抑郁和焦虑症状)的稳定性和变化。我们还进一步研究了随着时间的推移,这些概念之间的相互关系和动态关系,以及遗传倾向在其时间不变稳定性中的作用:这项四波纵向研究包括与挪威出生医学登记处相连接的挪威母亲、父亲和儿童队列研究(MoBa)中的83124名妇女。研究收集了怀孕期间(30周)以及产后6个月、18个月和36个月的数据。幸福感和不幸福感以人际关系满意度量表、情绪差异量表和霍普金斯症状检查表-8为依据。遗传是通过幸福谱多基因指数来测量的。分析基于使用 R 的随机截距交叉滞后面板模型:所有四项结果都表现出高度稳定性,并且随着时间的推移相互关联,具有丰富的交叉滞后预测。从怀孕到产后 6 个月是最不稳定的时期,随后稳定性逐渐增强。产前关系满意度对产妇产后的心理健康起着至关重要的作用。妇女的幸福遗传倾向对所有四个构念的时变稳定性都有贡献:结论:了解幸福与不幸福的不同方面之间的相互关系有助于确定促进健康干预措施的潜在目标。遗传学在一定程度上解释了时间不变稳定性。从怀孕到产后 36 个月期间,孕产妇的幸福感和不幸福感的发展是相互依存的。
{"title":"Stability and change in maternal wellbeing and illbeing from pregnancy to three years postpartum.","authors":"Lilian Mayerhofer, Ragnhild Bang Nes, Baeksan Yu, Ziada Ayorech, Xiaoyu Lan, Eivind Ystrom, Espen Røysamb","doi":"10.1007/s11136-024-03730-z","DOIUrl":"https://doi.org/10.1007/s11136-024-03730-z","url":null,"abstract":"<p><strong>Purpose: </strong>Motherhood affects women's mental health, encompassing aspects of both wellbeing and illbeing. This study investigated stability and change in wellbeing (i.e., relationship satisfaction and positive affect) and illbeing (i.e., depressive and anxiety symptoms) from pregnancy to three years postpartum. We further investigated the mutual and dynamic relations between these constructs over time and the role of genetic propensities in their time-invariant stability.</p><p><strong>Data and methods: </strong>This four-wave longitudinal study included 83,124 women from the Norwegian Mother, Father, and Child Cohort Study (MoBa) linked to the Medical Birth Registry of Norway. Data were collected during pregnancy (30 weeks) and at 6, 18 and 36 months postpartum. Wellbeing and illbeing were based on the Relationship Satisfaction Scale, the Differential Emotions Scale and Hopkins Symptoms Checklist-8. Genetics were measured by the wellbeing spectrum polygenic index. Analyses were based on random intercept cross-lagged panel models using R.</p><p><strong>Results: </strong>All four outcomes showed high stability and were mutually interconnected over time, with abundant cross-lagged predictions. The period of greatest instability was from pregnancy to 6 months postpartum, followed by increasing stability. Prenatal relationship satisfaction played a crucial role in maternal mental health postpartum. Women's genetic propensity to wellbeing contributed to time-invariant stability of all four constructs.</p><p><strong>Conclusion: </strong>Understanding the mutual relationship between different aspects of wellbeing and illbeing allows for identifying potential targets for health promotion interventions. Time-invariant stability was partially explained by genetics. Maternal wellbeing and illbeing develop in an interdependent way from pregnancy to 36 months postpartum.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141591222","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-09DOI: 10.1007/s11136-024-03705-0
Cai Xu, Chris Sidey-Gibbons, Tamara E Lacourt
Purpose: To develop a PRO assessment of multidimensional cancer-related fatigue based on the PROMIS fatigue assessments.
Method: Cancer patients reporting fatigue were recruited from a comprehensive cancer care center and completed a survey including 39 items from the PROMIS Cancer Item Bank-Fatigue. Component and factor structures of the fatigue items were explored with Monte Carlo parallel factor and Mokken analyses, respectively. Psychometric properties were determined using item response theory, ensuring unidimensionality, scalability, and item independence.
Results: Fatigue scores from a sample of 333 fatigued cancer patients (mean age = 59.50, SD = 11.62, 67% women) were used in all scale development analyses. Psychometric analyses yielded 3 dimensions: motivational fatigue (15 items), cognitive fatigue (9 items), and physical fatigue (9 items). The subscales showed strong unidimensionality, were scalable, and were free of differential item function. Confirmatory factor analyses in a new sample of 182 patients confirmed the findings.
Conclusion: The resulting 33-item PROMIS multidimensional cancer-related fatigue (mCRF) form provides a novel measure for the assessment of the different dimensions of cancer-related fatigue. It is the only multidimensional scale specific for cancer patients that has been developed using modern psychometric approaches. With its 3 dimensions (motivational, cognitive, and physical fatigue), this scale accurately captures the fatigue experienced by cancer patients, allowing clinicians to optimize fatigue management and improve patient care. The scale could also advance research on the nature and experience of cancer-related fatigue.
{"title":"Development of a PROMIS multidimensional cancer-related fatigue (mCRF) form using modern psychometric techniques.","authors":"Cai Xu, Chris Sidey-Gibbons, Tamara E Lacourt","doi":"10.1007/s11136-024-03705-0","DOIUrl":"https://doi.org/10.1007/s11136-024-03705-0","url":null,"abstract":"<p><strong>Purpose: </strong>To develop a PRO assessment of multidimensional cancer-related fatigue based on the PROMIS fatigue assessments.</p><p><strong>Method: </strong>Cancer patients reporting fatigue were recruited from a comprehensive cancer care center and completed a survey including 39 items from the PROMIS Cancer Item Bank-Fatigue. Component and factor structures of the fatigue items were explored with Monte Carlo parallel factor and Mokken analyses, respectively. Psychometric properties were determined using item response theory, ensuring unidimensionality, scalability, and item independence.</p><p><strong>Results: </strong>Fatigue scores from a sample of 333 fatigued cancer patients (mean age = 59.50, SD = 11.62, 67% women) were used in all scale development analyses. Psychometric analyses yielded 3 dimensions: motivational fatigue (15 items), cognitive fatigue (9 items), and physical fatigue (9 items). The subscales showed strong unidimensionality, were scalable, and were free of differential item function. Confirmatory factor analyses in a new sample of 182 patients confirmed the findings.</p><p><strong>Conclusion: </strong>The resulting 33-item PROMIS multidimensional cancer-related fatigue (mCRF) form provides a novel measure for the assessment of the different dimensions of cancer-related fatigue. It is the only multidimensional scale specific for cancer patients that has been developed using modern psychometric approaches. With its 3 dimensions (motivational, cognitive, and physical fatigue), this scale accurately captures the fatigue experienced by cancer patients, allowing clinicians to optimize fatigue management and improve patient care. The scale could also advance research on the nature and experience of cancer-related fatigue.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559488","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-09DOI: 10.1007/s11136-024-03698-w
Werner Vach, Franziska Saxer
{"title":"Requirements on construction methods for MID values should be fulfilled for at least one method.","authors":"Werner Vach, Franziska Saxer","doi":"10.1007/s11136-024-03698-w","DOIUrl":"https://doi.org/10.1007/s11136-024-03698-w","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559491","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-09DOI: 10.1007/s11136-024-03673-5
Berend Terluin, Lina H Ingelsrud, Yong-Hao Pua
{"title":"The MID<sub>50</sub> is not insensitive to the distribution of the change score if measurement error is taken into account.","authors":"Berend Terluin, Lina H Ingelsrud, Yong-Hao Pua","doi":"10.1007/s11136-024-03673-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03673-5","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559493","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-05DOI: 10.1007/s11136-024-03708-x
Amy M O'Connor, Amy Cassedy, Mitchell Cohen, Caren Goldberg, Jacqueline Lamour, William Mahle, Lynn Mahony, Kathleen Mussatto, Jane Newburger, Marc E Richmond, Maully Shah, Gil Wernovsky, Jo Wray, Bradley S Marino
Purpose: Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention.
Methods: Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time.
Results: We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group.
Conclusion: The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.
{"title":"Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery.","authors":"Amy M O'Connor, Amy Cassedy, Mitchell Cohen, Caren Goldberg, Jacqueline Lamour, William Mahle, Lynn Mahony, Kathleen Mussatto, Jane Newburger, Marc E Richmond, Maully Shah, Gil Wernovsky, Jo Wray, Bradley S Marino","doi":"10.1007/s11136-024-03708-x","DOIUrl":"https://doi.org/10.1007/s11136-024-03708-x","url":null,"abstract":"<p><strong>Purpose: </strong>Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention.</p><p><strong>Methods: </strong>Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time.</p><p><strong>Results: </strong>We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group.</p><p><strong>Conclusion: </strong>The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535135","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-05DOI: 10.1007/s11136-024-03700-5
Carolyn E Schwartz, Katrina Borowiec
Background: People who were disabled from working reported substantially worse depression in recent research [1] despite adjustment for demographic covariates, cognitive-appraisal processes, and COVID-specific stressors, thus motivating the present work.
Objective: This study sought to "drill down" to understand employment-group differences (employed, retired, unemployed, disabled) in cognitive factors, and how these factors played into paths to depression during COVID early in the pandemic and depression trajectories over 15.5 months of follow-up.
Methods: This longitudinal cohort study (n = 771) included chronically ill and general-population samples in the United States, characterized into the same depression-trajectory groups as the earlier study [1]. The Quality-of-Life Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. COVID-specific scales assessed hardship, worry, and social support. Chi-square, Analysis of Variance, classification and regression tree, and random effects modeling investigated factors associated with reported depression over time specifically by employment group, rather than in the whole sample which was the focus of the earlier study.
Results: Disabled participants were disproportionately represented in the stably depressed trajectory group, reporting more hardship and worry, and lower social support than employed and retired participants (p < 0.0001). They were more likely to focus on health goals, problem goals, and emphasizing the negative (p < 0.001). They had different paths and cut-points to depression than employed/unemployed/retired participants. Even mild endorsement of emphasizing the negative and recent changes predicted higher depression. COVID-specific stressors and cognitive-appraisal processes were less implicated in depression among disabled participants compared to others.
Conclusions: Disabled participants were at greater risk of stable depression during the COVID pandemic. Small increases in emphasizing the negative were a path to worse depression, and disabled participants' depression may be less reactive to external circumstances or ways of thinking.
{"title":"Disabled from work and depressed: cognitive factors associated with exacerbated or attenuated depression over the COVID-19 pandemic.","authors":"Carolyn E Schwartz, Katrina Borowiec","doi":"10.1007/s11136-024-03700-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03700-5","url":null,"abstract":"<p><strong>Background: </strong>People who were disabled from working reported substantially worse depression in recent research [1] despite adjustment for demographic covariates, cognitive-appraisal processes, and COVID-specific stressors, thus motivating the present work.</p><p><strong>Objective: </strong>This study sought to \"drill down\" to understand employment-group differences (employed, retired, unemployed, disabled) in cognitive factors, and how these factors played into paths to depression during COVID early in the pandemic and depression trajectories over 15.5 months of follow-up.</p><p><strong>Methods: </strong>This longitudinal cohort study (n = 771) included chronically ill and general-population samples in the United States, characterized into the same depression-trajectory groups as the earlier study [1]. The Quality-of-Life Appraisal Profile<sub>v2</sub> Short-Form assessed cognitive-appraisal processes. COVID-specific scales assessed hardship, worry, and social support. Chi-square, Analysis of Variance, classification and regression tree, and random effects modeling investigated factors associated with reported depression over time specifically by employment group, rather than in the whole sample which was the focus of the earlier study.</p><p><strong>Results: </strong>Disabled participants were disproportionately represented in the stably depressed trajectory group, reporting more hardship and worry, and lower social support than employed and retired participants (p < 0.0001). They were more likely to focus on health goals, problem goals, and emphasizing the negative (p < 0.001). They had different paths and cut-points to depression than employed/unemployed/retired participants. Even mild endorsement of emphasizing the negative and recent changes predicted higher depression. COVID-specific stressors and cognitive-appraisal processes were less implicated in depression among disabled participants compared to others.</p><p><strong>Conclusions: </strong>Disabled participants were at greater risk of stable depression during the COVID pandemic. Small increases in emphasizing the negative were a path to worse depression, and disabled participants' depression may be less reactive to external circumstances or ways of thinking.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535136","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-05DOI: 10.1007/s11136-024-03714-z
Nancy E Mayo, Mohammad Auais, Ruth Barclay, Joan Branin, Helen Dawes, Ida J Korfage, Kim Sawchuk, Eran Tal, Carole L White, Zain Ayoubi, Fariha Chowdhury, Julia Henderson, Mae Mansoubi, Kedar K V Mate, Lyne Nadea, Sebastian Rodriguez, Ayse Kuspinar
Aims: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL).
Methods: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization.
Results: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages.
Conclusion: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.
{"title":"Measuring what matters to older persons for active living: part I content development for the OPAL measure across four countries.","authors":"Nancy E Mayo, Mohammad Auais, Ruth Barclay, Joan Branin, Helen Dawes, Ida J Korfage, Kim Sawchuk, Eran Tal, Carole L White, Zain Ayoubi, Fariha Chowdhury, Julia Henderson, Mae Mansoubi, Kedar K V Mate, Lyne Nadea, Sebastian Rodriguez, Ayse Kuspinar","doi":"10.1007/s11136-024-03714-z","DOIUrl":"https://doi.org/10.1007/s11136-024-03714-z","url":null,"abstract":"<p><strong>Aims: </strong>Many older persons do not think of themselves as \"patients\" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL).</p><p><strong>Methods: </strong>For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization.</p><p><strong>Results: </strong>Analyses of transcripts from 148 older persons revealed that active living was a \"way of being\" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar \"ways\" together and after conducting a consensus rating of importance, 19 unique and important \"ways\" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 \"ways of being\" with harmonized wording in 4 languages.</p><p><strong>Conclusion: </strong>This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535138","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}