Quality of Life Research最新文献_第9页

'The disease ruined my life': a qualitative study of the quality of life in women with uterine fibroids. 疾病毁了我的生活"：子宫肌瘤妇女生活质量定性研究。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-27 DOI: 10.1007/s11136-024-03841-7

Parvin Mohebbi, Shahideh Jahanian Sadatmahalleh, Fazlollah Ahmadi, Ali Montazeri

{"title":"'The disease ruined my life': a qualitative study of the quality of life in women with uterine fibroids.","authors":"Parvin Mohebbi, Shahideh Jahanian Sadatmahalleh, Fazlollah Ahmadi, Ali Montazeri","doi":"10.1007/s11136-024-03841-7","DOIUrl":"https://doi.org/10.1007/s11136-024-03841-7","url":null,"abstract":"Purpose: Symptomatic uterine fibroids are difficult to live with because affected women experience many clinical manifestations that can impact their quality of life. The purpose of the current study was to explore the quality of life in women with uterine fibroids.Methods: This qualitative study was conducted on a purposive sample of women with uterine fibroids, using conventional content analysis based on Granheim and Lundman's approach. The steps included transcribing verbatim immediately after conducting each interview, reading the entire text to obtain an overall concept, identifying semantic units, coding, classifying similar codes into more comprehensive subcategories and categories, and extracting the main themes. Data were collected through semi-structured, in-depth individual interviews with 15 patients with uterine fibroids who were referred to the health centers and a teaching hospital of Zanjan, Iran, from September 2022 to July 2023. The data collection was continued until data saturation.Results: Twenty-five eligible patients were invited to participate in the study, and 15 of them accepted, resulting in an agreement rate of 60%. While women expressed devastating experiences due to the disease, they also indicated some positive elements in their day-to-day living. Overall, four themes emerged from the data analysis as follows: health challenges, determination for an optimal lifestyle, perceived social support, and religious practice.Conclusion: The impact of uterine fibroids on quality of life is complex, extending beyond physical, psychological, and social effects. In addition to these known dimensions, spirituality and perceived support are also crucial. Addressing these dimensions is essential for improving quality of life of women with uterine fibroids.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142732176","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}

引用次数: 0

Valuation survey for SF-6Dv2 in Japan based on the international protocol. 基于国际协议的日本 SF-6Dv2 估值调查。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-27 DOI: 10.1007/s11136-024-03830-w

Takeru Shiroiwa, Yosuke Yamamoto, Tatsunori Murata, Brendan Mulhern, Jakob Bjorner, John Brazier, Takashi Fukuda, Donna Rowen, Shun-Ichi Fukuhara

{"title":"Valuation survey for SF-6Dv2 in Japan based on the international protocol.","authors":"Takeru Shiroiwa, Yosuke Yamamoto, Tatsunori Murata, Brendan Mulhern, Jakob Bjorner, John Brazier, Takashi Fukuda, Donna Rowen, Shun-Ichi Fukuhara","doi":"10.1007/s11136-024-03830-w","DOIUrl":"https://doi.org/10.1007/s11136-024-03830-w","url":null,"abstract":"Purpose: The SF-6D Classification System was recently updated (SF-6Dv2). We performed a valuation survey to construct a value set for the SF-6Dv2 in Japan.Methods: An online discrete choice experiment (DCE) with duration was used to estimate a value set for the SF-6Dv2 for Japan based on public preferences. The target sample number was 3800. Respondents were asked to complete 15 choice tasks. A conditional logit model that estimates interactions between time and each dimension was used to develop the value set.Results: The collected sample included 3933 respondents for the DCE tasks. The results of all the unconstrained models showed some inconsistencies. In particular, inconsistencies in the two most severe levels of the role limitation (RL) and vitality (VT) dimensions were observed in all models. The number of inconsistencies was smallest in a core model (n = 3) and in a model for core and common health states (n = 2). The physical functioning (PF) and pain (PA) dimensions had the greatest influence on utility at the overall level across all models. RL, VT, and social functioning (SF) had smaller overall impacts on utility. The PF weights for the two most severe levels are much lower than those in the UK and Australia. The Japanese scores tended to be lower compared with the UK SF-6Dv2 scores.Conclusion: We obtained a value set for Japan (model 5). With the development of this value set, it is now possible to calculate quality-adjusted life years for economic evaluation in Japan when the SF-6Dv2 has been used.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142732178","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}

引用次数: 0

Understanding the impact of early onset colorectal cancer on quality of life: a qualitative analysis of online forum data. 了解早期结直肠癌对生活质量的影响：在线论坛数据的定性分析。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-26 DOI: 10.1007/s11136-024-03857-z

Alice Spencer, Christopher Bedding, Emma Nicklin, Hélène Flint, Alexandra Gilbert

引用次数: 0

Understanding diagnostic delays and health outcomes for inflammatory bowel disease: a mixed-methods study of patients' perspectives. 了解炎症性肠病的诊断延误和健康结果：对患者观点的混合方法研究。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-26 DOI: 10.1007/s11136-024-03852-4

R J Purc-Stephenson, Keely Blake

{"title":"Understanding diagnostic delays and health outcomes for inflammatory bowel disease: a mixed-methods study of patients' perspectives.","authors":"R J Purc-Stephenson, Keely Blake","doi":"10.1007/s11136-024-03852-4","DOIUrl":"https://doi.org/10.1007/s11136-024-03852-4","url":null,"abstract":"Purpose: Inflammatory bowel disease (IBD) is a chronic condition affecting the digestive system with symptoms that are often episodic, unpredictable, socially stigmatizing, and impact quality of life. While a timely diagnosis reduces the risk of complications and improves health outcomes, diagnostic delays (DDs) are common. Our study used narratives and data from patient-reported outcome measures (PROMs) of individuals diagnosed with IBD to examine: (1) What factors helped or hindered achieving a timely diagnosis of IBD? and (2) how do DDs relate to PROMs?Methods: We conducted a mixed-methods study of 296 individuals diagnosed with IBD in Canada. The survey included a set of validated measures that assessed depression, fatigue, satisfaction with life, disease severity, and several open-ended questions.Results: Thematic analysis of open-ended responses revealed five themes that highlighted the ways a diagnosis was delayed or facilitated: symptom ambiguity, fear and denial, patient-provider communication breakdown, misdiagnosis and self-doubt, and self-advocacy. Quantitative findings revealed that a longer time to receive a diagnosis was significantly correlated with higher levels of depression (r = .26) and fatigue (r = .25), reduced satisfaction with life (r = - .25), and greater disease severity (r = - .22). We used the data to generate a framework called the Diagnostic Pathways Model to illustrate the diagnostic process of a chronic disease such as IBD.Conclusion: DDs involve the interacting roles of patient, medical, and communication factors, and a DD can negatively impact a patient's quality of life. Implications for physician-patient communication and public information are discussed.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142716975","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}

引用次数: 0

Developing a utility value set for the Gambling Quality of Life Scale-Brief (GQoLS-Brief) using a discrete choice experiment. 利用离散选择实验为赌博生活质量量表-简易版（GQoLS-简易版）开发效用值集。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-26 DOI: 10.1007/s11136-024-03835-5

Amandine Luquiens, Henri Panjo, Céline Bonnaire, Nathalie Pelletier-Fleury

{"title":"Developing a utility value set for the Gambling Quality of Life Scale-Brief (GQoLS-Brief) using a discrete choice experiment.","authors":"Amandine Luquiens, Henri Panjo, Céline Bonnaire, Nathalie Pelletier-Fleury","doi":"10.1007/s11136-024-03835-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03835-5","url":null,"abstract":"Objectives: The Gambling Quality of Life Scale -brief (GQoLS-Brief) assesses the impact of gambling disorder (GD) on quality of life (QoL). Preference-based measures are essential for obtaining the quality adjustment weight (i.e. utility score) needed to calculate quality-adjusted life years (QALYs) in economic evaluations. We aimed to derive a value set for the GQoLS-Brief.Methods: We employed a discrete choice experiment for preference elicitation. An online survey was administered (n = 928). Respondents completed 10 choice tasks, each presenting two GQoLS-Brief health states alongside life expectancy. Conditional logit regression, parameterized to fit the QALY framework, was used for data analysis. QALY weights for each health state defined by the GQoLS-Brief were calculated.Results: The estimated coefficients from the conditional logit models aligned with expectations: utility increased with survival time and decreased with QoL impairment. Utility values for health states ranged from - 1.48 (worse than death) to 1.0. \"Financial difficulties\" exhibited the highest utility decrement, followed by \"Sleep disturbance related to financial difficulties.\"Conclusions: This reference set facilitates the calculation of QALYs for economic evaluations of GD interventions. The weight of subjective financial difficulties underscores the need for therapeutic interventions to target this aspect.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142732172","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}

引用次数: 0

Myelofibrosis symptom assessment form total symptom score version 4.0: measurement properties from the MOMENTUM phase 3 study. 骨髓纤维化症状评估表症状总分 4.0 版：MOMENTUM 3 期研究的测量特性。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-25 DOI: 10.1007/s11136-024-03855-1

Christina Daskalopoulou, Boris Gorsh, Gerasimos Dumi, Samineh Deheshi, Chad Gwaltney, Jean Paty, Catherine Ellis, Jun Kawashima, Ruben Mesa

{"title":"Myelofibrosis symptom assessment form total symptom score version 4.0: measurement properties from the MOMENTUM phase 3 study.","authors":"Christina Daskalopoulou, Boris Gorsh, Gerasimos Dumi, Samineh Deheshi, Chad Gwaltney, Jean Paty, Catherine Ellis, Jun Kawashima, Ruben Mesa","doi":"10.1007/s11136-024-03855-1","DOIUrl":"https://doi.org/10.1007/s11136-024-03855-1","url":null,"abstract":"Purpose: The Myelofibrosis Symptom Assessment Form version 4.0 (MFSAF v4.0) comprises 7 common MF symptom items (fatigue, night sweats, pruritus, abdominal discomfort, pain under the left ribs, early satiety, bone pain) and is the first patient-reported outcome (PRO) instrument designed to assess MF symptom burden. Given that information on the psychometric properties of this instrument has been limited, we sought to evaluate its measurement properties and validate its use in the phase 3 MOMENTUM trial.Methods: Data were pooled to assess MFSAF item distribution, structural validity, reliability (test-retest and internal consistency), construct validity (convergent, divergent, and known-groups), and sensitivity to change. Other PRO measures included Patient Global Impression of Severity/Change (PGIS/PGIC), EORTC QLQ-C30, PROMIS Physical Function Short Form 10b, and ECOG performance status.Results: Participants (N = 195) showed high completion rates (> 93%) across 24 weeks. Moderate to strong Spearman correlation coefficients among items were mostly observed at baseline (range, 0.289-0.772) and week 24 (range, 0.391-0.829), which supported combining items into a multi-item scale and total score. Internal consistency (Cronbach's α, 0.877 at baseline and 0.903 at week 24) and test-retest reliability (intraclass correlation coefficient, > 0.829) were satisfactory across selected time intervals. Reliability was also supported by McDonald's omega (ω) coefficient (> 0.875). MFSAF moderately correlated with PRO measures of similar content, differentiated between PGIS and ECOG groups (P < .001), and was able to detect change over time.Conclusions: The MFSAF v4.0 is a valid tool to assess MF symptom burden, supporting its use in future trials in similar populations.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142710925","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}

引用次数: 0

Patient-reported health status in TTR amyloidosis: which yardstick to use? TTR淀粉样变性患者报告的健康状况：使用哪种标准？

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-25 DOI: 10.1007/s11136-024-03859-x

Vincent Chen, Mazen Hanna, Trejeeve Martyn

引用次数: 0

A qualitative systematic review of the impact of hearing on quality of life. 听力对生活质量影响的定性系统回顾。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-23 DOI: 10.1007/s11136-024-03851-5

Nadine Henderson, Sian Hodgson, Brendan Mulhern, Katie Page, Chris Sampson

{"title":"A qualitative systematic review of the impact of hearing on quality of life.","authors":"Nadine Henderson, Sian Hodgson, Brendan Mulhern, Katie Page, Chris Sampson","doi":"10.1007/s11136-024-03851-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03851-5","url":null,"abstract":"Purpose: Hearing loss, deafness, and other hearing-related conditions can significantly impact quality of life; numerous qualitative studies have sought to describe these impacts. Synthesis of these findings may provide additional or more robust insights.Methods: A qualitative systematic review of studies reporting qualitative data relating to the impact of hearing problems on adults' health-related quality of life. A subset of studies was included in the review and subsequently analysed using a thematic approach.Results: The literature search yielded 129 studies, of which 22 met our inclusion criteria and were included for analysis. The included studies, primarily from Australia, the UK, and the USA, involved approximately 450 participants with various hearing conditions. Semi-structured interviews and focus groups were the most common data collection methods, with thematic analysis being the predominant analytical approach. Three overarching categories of descriptive themes were identified: Physical, Mental, and Social. Physical encompassed sound localization, sound clarity, speech, and physical fatigue. Social included relationships, isolation, communication, independence, work function, social stigma, and confidence. Mental encompassed depression, anxiety, listening effort, mental fatigue, fear, and identity. The identified themes shed light on the diverse domains of health-related quality of life affected by hearing conditions.Conclusion: Differences in hearing function impact upon people's health-related quality of life in a variety of ways relating to physical, mental, and social aspects of health, and these themes are clearly demonstrated across qualitative studies. These results will inform the development of hearing-specific questionnaire items for with the EQ-5D descriptive system, a commonly used patient-reported outcome measure.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142695727","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}

引用次数: 0

Depressive and anxiety symptoms in current, previous, and no history of ME/CFS: NHIS 2022 analysis. 当前、既往和无 ME/CFS 病史者的抑郁和焦虑症状：NHIS 2022 分析。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-23 DOI: 10.1007/s11136-024-03854-2

Zoe Sirotiak, Jenna L Adamowicz, Emily B K Thomas

{"title":"Depressive and anxiety symptoms in current, previous, and no history of ME/CFS: NHIS 2022 analysis.","authors":"Zoe Sirotiak, Jenna L Adamowicz, Emily B K Thomas","doi":"10.1007/s11136-024-03854-2","DOIUrl":"https://doi.org/10.1007/s11136-024-03854-2","url":null,"abstract":"Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with anxiety and depressive symptoms. Psychological symptoms are predisposing factors for, as well as symptoms of, ME/CFS. Recovery from ME/CFS is poorly understood and heterogenous, and it is unclear how psychological symptoms may change with recovery. The aim of this study was to examine the associations of depressive and anxious symptoms among individuals with current, previous, and no history of ME/CFS.Methods: National Health Interview Survey 2022 data were analyzed to assess ME/CFS status, as well as anxiety and depression burden. Adults (unweighted N = 27,651) in the United States reported sociodemographic and health behavior characteristics, with 453 adults reporting current ME/CFS, while 119 reported previous ME/CFS. Sample weights and variance estimation variables were implemented. Multivariable linear regression models were used to analyze the associations between ME/CFS status and anxiety and depression severity after adjusting for sociodemographic and health behavior variables.Results: Participants were on average 48.1 years of age, and most identified as female (51.3%), white (76.6%), and not Hispanic or Latine (82.8%). Current and previous ME/CFS were associated with anxiety and depressive symptoms compared to individuals with no history of ME/CFS. Clinically significant levels of anxiety and depressive symptoms were substantial for individuals with current (37.6%; 49.0%) and previous (26.5%; 33.4%) ME/CFS compared to individuals with no history of ME/CFS (6.1%; 6.7%).Conclusion: ME/CFS, regardless of current presence, was related to significantly greater anxiety and depressive symptom burden.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142695748","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}

引用次数: 0

Factors that impact the implementation of patient reported outcomes in routine clinical care for peripheral artery disease from the patient perspective. 从患者角度看影响在外周动脉疾病常规临床护理中实施患者报告结果的因素。

IF 3.3 3区医学

Quality of Life Research Pub Date : 2024-11-23 DOI: 10.1007/s11136-024-03842-6

Teryn A Holeman, Julie Hales, Amy M Cizik, Susan Zickmund, Jacob Kean, Benjamin S Brooke

{"title":"Factors that impact the implementation of patient reported outcomes in routine clinical care for peripheral artery disease from the patient perspective.","authors":"Teryn A Holeman, Julie Hales, Amy M Cizik, Susan Zickmund, Jacob Kean, Benjamin S Brooke","doi":"10.1007/s11136-024-03842-6","DOIUrl":"https://doi.org/10.1007/s11136-024-03842-6","url":null,"abstract":"Purpose: Patient reported outcome measures (PROMs) are well-suited for the longitudinal assessment of quality of life, including depression and physical limitations associated with peripheral artery disease (PAD) that are not routinely assessed in clinical care. This study was designed to gain the patient perspective to facilitate implementation of PROMs into clinical practice for PAD management.Methods: Twenty-three patients with PAD at a single vascular surgery clinic were enrolled for a qualitative interview, July-December 2022. Patients completed PROMIS Physical Function and Depression assessments before undergoing semi-structured interviews. Two researchers used an inductive thematic analysis to analyze emergent themes from transcribed interviews.Results: The average age of participants was 69.5 ± 8.2 years; 91% were Caucasian, and 39% were female. Qualitative interviews revealed three implementation-related themes: (1) patient preferences on the timing and type of PROMs collected, (2) PROMs applications in outpatient PAD care, including discussions with their physician, and (3) the clinical value of PROMs. Overall, patients with PAD prefer PROMs related to quality of life and physical function over other domains. Patients appreciate the convenience to complete PROMs before their appointment. Patients would like to verbally discuss meaningful score changes with their providers without the use of graphical aids. Most patients believe PROMs are valuable in their clinical care if their physician reviews the results and the PROM questions apply to their disease symptoms.Conclusions: Patient preferences inform future successful implementations and will improve patient completion rates for the collection and clinical use of PROMs in PAD clinical care.","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142695767","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}

引用次数: 0