Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-20DOI: 10.1007/s11136-024-03843-5
Abdenour Nabid, Nathalie Carrier, André-Guy Martin, Jean-Paul Bahary, Peter Vavassis, Sylvie Vass, Boris Bahoric, Robert Archambault, François Vincent, Redouane Bettahar, Luis Souhami
{"title":"Quality of life and testosterone recovery after androgen deprivation therapy in high-risk prostate cancer patients: long-term data from a phase III trial.","authors":"Abdenour Nabid, Nathalie Carrier, André-Guy Martin, Jean-Paul Bahary, Peter Vavassis, Sylvie Vass, Boris Bahoric, Robert Archambault, François Vincent, Redouane Bettahar, Luis Souhami","doi":"10.1007/s11136-024-03843-5","DOIUrl":"10.1007/s11136-024-03843-5","url":null,"abstract":"<p><strong>Purpose: </strong>The aim was to compare quality of life (QoL) of patients with testosterone recovery (TR) to patients without TR after the completion of either 18- or 36-month androgen deprivation therapy (ADT) for prostate cancer.</p><p><strong>Methods: </strong>From a Phase III trial, we selected all 630 randomised patients with testosterone measured at baseline (during screening, before randomisation) and follow-up and who completed baseline, 6-month and, at least, one further QoL questionnaire in follow-up (EORTC 30 - PR25). We estimated means and standard deviation of items and scales for each group at each time point. We analyzed items and scales scores with general linear model with repeated measures to evaluate changes between patients with or without TR to a normal level. p-values were adjusted for multiple comparisons with Benjamini-Hochberg's false discovery rate procedure (p<sub>adj</sub>). A p<sub>adj</sub> < 0.05 was considered significant and mean differences of 10 points or more considered clinically relevant.</p><p><strong>Results: </strong>494 patients retained for analysis (median follow-up 16.2 years). A significantly higher number of patients (177/314 vs 79/180, p = 0.008) recovered a normal testosterone level in a significantly shorter time [median (IQR): 3.06 (2.55-3.65) vs 5.00 years (4.5-5.96), p < 0.001] in the 18- vs the 36-month cohort. Patients with TR had a significantly better QoL: 37/55 items and 14/21 scales (p<sub>adj</sub><0.05) in the 18-month and 25/55 items and 13/21 scales in the 36-month cohort. Moreover, 9 items and one scale reached clinical relevance in the 18-month cohort and 7 items and one scale in the 36-month cohort.</p><p><strong>Conclusions: </strong>TR is associated with significant regaining in QoL. A faster and significantly higher TR is seen in the shorter ADT schedule.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"725-737"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676739","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}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-26DOI: 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":"10.1007/s11136-024-03852-4","url":null,"abstract":"<p><strong>Purpose: </strong>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?</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"823-832"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","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}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-12-05DOI: 10.1007/s11136-024-03846-2
Carrie R Houts, Andrea Savord, Molly J Gardner, Maria Mattera, John Devin Peipert, Trishala Agrawal, Mahadi Baig, Praveen Barala, Joshua Bauml, Brooke Diorio, Angela Girvin, Jan Sermon, Sujay Shah, Monica Withelder, Honeylet Wortman-Vayn, Julia Schuchard
{"title":"Patient-reported outcomes in non-small cell lung cancer: psychometric evaluation of the PROMIS PF-SF 8c and NSCLC-SAQ in two phase 3 clinical trials.","authors":"Carrie R Houts, Andrea Savord, Molly J Gardner, Maria Mattera, John Devin Peipert, Trishala Agrawal, Mahadi Baig, Praveen Barala, Joshua Bauml, Brooke Diorio, Angela Girvin, Jan Sermon, Sujay Shah, Monica Withelder, Honeylet Wortman-Vayn, Julia Schuchard","doi":"10.1007/s11136-024-03846-2","DOIUrl":"10.1007/s11136-024-03846-2","url":null,"abstract":"<p><strong>Purpose: </strong>Physical functioning and symptom severity are important factors in the experience of people with living with non-small cell lung cancer (NSCLC). This study evaluates the reliability, validity, and meaningful within-person change (MWPC) thresholds of 2 patient-reported outcome (PRO) measures in NSCLC: the Patient-Reported Outcomes Measurement Information System (PROMIS®) Physical Function (PF) short form (SF) 8c and the Non-Small Cell Lung Cancer Symptom Assessment Questionnaire (NSCLC-SAQ).</p><p><strong>Methods: </strong>Data came from 2 Phase 3 clinical trials among people living with NSCLC. PROMIS PF-SF analyses included data from 300 participants in the PAPILLON trial, and NSCLC-SAQ analyses included 615 participants in the MARIPOSA 2 trial. Prespecified expected relationships between target PRO measures and relevant study variables were used to evaluate validity evidence. Additionally, MWPC thresholds were estimated using anchor- and distribution-based analyses.</p><p><strong>Results: </strong>Both PRO measures exhibited adequate internal consistency for clinical trial use. All examined correlations with reference variables and score differences between clinically meaningful groups conformed to expectations for both measures. Estimated thresholds for meaningful worsening were a decrease of 6-7 points on the PROMIS PF-SF and an increase of 2-3 points on NSCLC-SAQ.</p><p><strong>Conclusions: </strong>This study is the first to examine longitudinal measurement properties of PROMIS PF-SF and investigates thresholds for meaningful change on the PROMIS PF-SF and NSCLC-SAQ measures. Results support the validity of these measures in NSCLC and aid the interpretation of clinically meaningful change in scores over time.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"751-762"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142786740","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}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-25DOI: 10.1007/s11136-024-03859-x
Vincent Chen, Mazen Hanna, Trejeeve Martyn
{"title":"Patient-reported health status in TTR amyloidosis: which yardstick to use?","authors":"Vincent Chen, Mazen Hanna, Trejeeve Martyn","doi":"10.1007/s11136-024-03859-x","DOIUrl":"10.1007/s11136-024-03859-x","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"593-594"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142710928","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}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-12-18DOI: 10.1007/s11136-024-03853-3
E J Ambeba, D D Sears, T Benmarhnia, L Natarajan, S Zamora, S Alismail, C P Tribby, M M Jankowska
{"title":"Association between cardiovascular health and perceived quality of life in ethnically diverse adults: insights from the Community of Mine study using the American Heart Association's Life's Simple 7.","authors":"E J Ambeba, D D Sears, T Benmarhnia, L Natarajan, S Zamora, S Alismail, C P Tribby, M M Jankowska","doi":"10.1007/s11136-024-03853-3","DOIUrl":"10.1007/s11136-024-03853-3","url":null,"abstract":"<p><strong>Purpose: </strong>The association between cardiovascular health (CVH) with perceived quality of life (PQoL) and variations by sex and Hispanic ethnicity is not well understood.</p><p><strong>Methods: </strong>This study included 583 participants (42% Hispanic, 56% female, mean age 59 years). Linear regression modeled the covariate-adjusted associations between CVH, using the combined 7 components of Life's Simple 7 (LS7; ideal and intermediate, compared to poor), and PQoL (total and physical, social, and cognitive health domains). For individual LS7 components, we assessed effect modification by sex and Hispanic ethnicity.</p><p><strong>Results: </strong>Compared to individuals with poor CVH, those with intermediate (β [95% CI] = 0.22 [0.09, 0.35]) and ideal (β [95% CI] = 0.22 [0.08, 0.36]) CVH had higher overall PQoL. This effect was dominated by the physical PQoL domain. Of LS7 components, ideal body mass index (BMI) (β [95% CI] = 0.17 [0.03, 0.31]) and physical activity (β [95% CI] = 0.26 [0.12, 0.40]) were associated with overall PQoL. Ideal diet (β [95% CI] = 0.32 [0.08, 0.56]) and fasting plasma glucose (β [95% CI] = 0.32 [0.06, 0.58]) were associated with the physical PQoL domain. A higher PQoL score was associated with intermediate BMI in women, and physical PQoL was associated with smoking for women. A BMI*Hispanic interaction resulted in larger associations between intermediate/ideal BMI and physical PQoL in non-Hispanics.</p><p><strong>Conclusion: </strong>Ideal or intermediate CVH health factors and health behaviors were associated with higher PQoL. Sex and ethnicity differences suggest that perceived quality of life is associated with BMI for women and non-Hispanics.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"789-799"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11920301/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142855158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-12-14DOI: 10.1007/s11136-024-03863-1
Andreas Krieg, Ernst W Kolbe, Michael Kaspari, Sarah Krieg, Sven H Loosen, Christoph Roderburg, Karel Kostev
{"title":"Depression in patients with anorectal fistulas and anal fissures: a propensity score-matched cohort study.","authors":"Andreas Krieg, Ernst W Kolbe, Michael Kaspari, Sarah Krieg, Sven H Loosen, Christoph Roderburg, Karel Kostev","doi":"10.1007/s11136-024-03863-1","DOIUrl":"10.1007/s11136-024-03863-1","url":null,"abstract":"<p><strong>Purpose: </strong>Anal fissures and anorectal fistulas are diseases often associated with significant pain and prolonged discomfort, resulting in a significantly reduced quality of life (QoL). They are not only a surgical problem but also have a profound psychosocial impact and influence on QoL. The aim of this study was to investigate the incidence of depression in patients with these pathologies and to highlight the need to address the psychosocial aspects of these diseases.</p><p><strong>Methods: </strong>Data from the Disease Analyzer database of approximately 3,000 general practitioners in Germany were retrospectively analyzed. The retrospective cohort study included patients aged ≥ 18 years diagnosed with anal fissure (n = 15,467) or anorectal fistula (n = 3,520) between January 2005 and December 2022 and propensity score matched individuals without these disorders (n = 94,935). The primary outcome was a diagnosis of depression within five years of the index date. Kaplan-Meier curves and Cox regression analyses were used to analyze the association between the two anorectal diseases and depression.</p><p><strong>Results: </strong>After 5 years of follow-up, 13.0% of patients with anal fissure and 12.3% of patients with anorectal fistula were diagnosed with depression, compared with 9.7-10.3% in the control group (p < 0.001). Cox regression analysis showed a significant association between both diseases and depression (anal fissure: HR: 1.31; 95% CI: 1.25-1.38; anorectal fistula: HR: 1.30; 95% CI: 1.17-1.44).</p><p><strong>Conclusion: </strong>The results suggest that anal fissures or anorectal fistulas are significantly associated with a subsequent depression. This highlights the importance of multidisciplinary management that addresses both physical and psychosocial aspects to improve patient outcomes.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"701-709"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11919947/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142823759","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-25DOI: 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":"10.1007/s11136-024-03855-1","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>The MFSAF v4.0 is a valid tool to assess MF symptom burden, supporting its use in future trials in similar populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"739-750"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11919960/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2025-01-03DOI: 10.1007/s11136-024-03840-8
Louis S Matza, Timothy A Howell, Bianca Chun, Lucinda Hetherington, Meghan White, Thomas Weiss, Min Huang, Donna Rowen, Tina Tan, Kristen Feemster, Bayad Nozad, Matthew S Kelly, Alejandro Hoberman, Salini Mohanty
{"title":"Health state utilities associated with invasive pneumococcal disease, pneumonia, and recurrent acute otitis media in young children.","authors":"Louis S Matza, Timothy A Howell, Bianca Chun, Lucinda Hetherington, Meghan White, Thomas Weiss, Min Huang, Donna Rowen, Tina Tan, Kristen Feemster, Bayad Nozad, Matthew S Kelly, Alejandro Hoberman, Salini Mohanty","doi":"10.1007/s11136-024-03840-8","DOIUrl":"10.1007/s11136-024-03840-8","url":null,"abstract":"<p><strong>Purpose: </strong>Cost-utility analyses examining the value of new vaccines for pneumococcal disease will require health state utilities as inputs. Existing utilities for pneumococcal infections in young children are limited. The purpose of this study was to estimate health state utilities associated with pneumococcal infections in young children.</p><p><strong>Methods: </strong>Six health state vignettes depicting infections due to Streptococcus pneumoniae were drafted based on published literature and clinician interviews. To address methodological challenges in estimating utilities for temporary infections in children 0-5 years of age, several time trade-off approaches were explored in a pilot study (N = 28 participants). In the subsequent utility elicitation study conducted in the UK, health states were valued using the best performing method from the pilot (10-year time horizon, with infections repeated annually) with adult general population respondents imagining a child 2-5 years of age.</p><p><strong>Results: </strong>A total of 208 participants completed interviews (51.9% female; mean [SD] age = 41.0 [14.9] years). Mean (SD) utilities were 0.902 (0.092) for pneumonia requiring hospitalization, 0.901 (0.087) for bacteremia, 0.894 (0.103) for recurrent acute otitis media (AOM), 0.882 (0.107) for recurrent AOM treated with pressure equalization tubes, 0.878 (0.109) for bacteremic pneumonia, and 0.809 (0.145) for meningitis.</p><p><strong>Conclusion: </strong>Lower health state utilities were associated with health states that had longer treatment periods, required more invasive treatment, and described more severe infections. Utilities from this study can be used in models examining cost-effectiveness of pneumococcal vaccines. These results have methodological implications for future research estimating utilities associated with temporary pediatric health conditions.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"809-821"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11920316/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142922662","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-23DOI: 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":"10.1007/s11136-024-03842-6","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>Patient preferences inform future successful implementations and will improve patient completion rates for the collection and clinical use of PROMs in PAD clinical care.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"711-723"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","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}
Quality of Life ResearchPub Date : 2025-03-01Epub Date: 2024-11-27DOI: 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":"10.1007/s11136-024-03841-7","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"867-877"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","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}