Pub 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
Purpose: 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.
Methods: 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.
Results: 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).
Conclusion: 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.
{"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}
Pub 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
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.
{"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}
Pub 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
Purpose: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
{"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}
Pub Date : 2025-03-01Epub Date: 2024-12-04DOI: 10.1007/s11136-024-03839-1
Zhiwei Liu, Dandan Xiang, Song Ge, Yongxia Mei, Zhenxiang Zhang, Suyan Chen, Erfeng Guo, Xin Li
Purpose: This study utilized a group-based dual-trajectory model to identify distinct dyadic quality of life (QoL) trajectories among young to middle-aged stroke couples and to analyze the predictive factors influencing these trajectories.
Methods: A longitudinal study was conducted with 168 young to middle-aged stroke couples. Assessments at baseline and at 1, 3, and 6 months post-discharge included patients' functional recovery (modified Rankin Scale) and stroke couples' depression, anxiety, stress, benefit finding, social support, couple relationship, and QoL (12-item short-form health scale). Dyadic QoL trajectories were identified using a group-based dual-trajectory model. Stepwise logistic regression was employed to identify the predictors of the trajectory groups.
Results: Three subgroups of dyadic physical QoL trajectories were distinguished: "patients low increase-spouses moderate physical QoL" (15.4%), "patients moderate increase-spouses moderate physical QoL" (74.0%), and "patients moderate increase-spouses high physical QoL" (10.6%). Two subgroups of dyadic mental QoL trajectories were distinguished: "dyadic low increase mental QoL" (15.9%), and "dyadic high increase mental QoL" (84.1%). The trajectory groups were influenced by the patient's sex, functional recovery, depression, and the spouse's mutuality.
Conclusions: The group-based dual-trajectory model facilitates the identification of distinct dyadic QoL trajectories among stroke couples. These findings provide valuable insights for developing targeted interventions aimed at improving their QoL.
{"title":"Trajectories of dyadic quality of life in young to middle-aged stroke couples: a longitudinal study.","authors":"Zhiwei Liu, Dandan Xiang, Song Ge, Yongxia Mei, Zhenxiang Zhang, Suyan Chen, Erfeng Guo, Xin Li","doi":"10.1007/s11136-024-03839-1","DOIUrl":"10.1007/s11136-024-03839-1","url":null,"abstract":"<p><strong>Purpose: </strong>This study utilized a group-based dual-trajectory model to identify distinct dyadic quality of life (QoL) trajectories among young to middle-aged stroke couples and to analyze the predictive factors influencing these trajectories.</p><p><strong>Methods: </strong>A longitudinal study was conducted with 168 young to middle-aged stroke couples. Assessments at baseline and at 1, 3, and 6 months post-discharge included patients' functional recovery (modified Rankin Scale) and stroke couples' depression, anxiety, stress, benefit finding, social support, couple relationship, and QoL (12-item short-form health scale). Dyadic QoL trajectories were identified using a group-based dual-trajectory model. Stepwise logistic regression was employed to identify the predictors of the trajectory groups.</p><p><strong>Results: </strong>Three subgroups of dyadic physical QoL trajectories were distinguished: \"patients low increase-spouses moderate physical QoL\" (15.4%), \"patients moderate increase-spouses moderate physical QoL\" (74.0%), and \"patients moderate increase-spouses high physical QoL\" (10.6%). Two subgroups of dyadic mental QoL trajectories were distinguished: \"dyadic low increase mental QoL\" (15.9%), and \"dyadic high increase mental QoL\" (84.1%). The trajectory groups were influenced by the patient's sex, functional recovery, depression, and the spouse's mutuality.</p><p><strong>Conclusions: </strong>The group-based dual-trajectory model facilitates the identification of distinct dyadic QoL trajectories among stroke couples. These findings provide valuable insights for developing targeted interventions aimed at improving their QoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"669-681"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142771493","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 : 2025-03-01Epub Date: 2024-12-03DOI: 10.1007/s11136-024-03850-6
Chao Xu, Jie Wei, Liang Li, Shuxin Yao, Xiaofeng Chang, Jianbing Ma, Lei Shang
Purpose: Patient-reported outcome measures (PROMs) are being used more frequently in total knee arthroplasty (TKA). By utilizing high-quality scales, surgeons can achieve a more comprehensive and accurate evaluation of the effectiveness of TKA surgery. Currently, there is no widely accepted conceptual model for TKA PROMs. The objective of this study is to fill this gap by developing a conceptual model and preliminary content for a PROM that is specifically designed for TKA patients in mainland China.
Methods: The study design consisted of three stages: (1) a targeted literature review followed by the formation of a conceptual model pool; (2) qualitative data collection involving experts and patients, leading to the development of the preliminary Chinese TKA PROM (CTP); and (3) review of the CTP by experts using the Delphi method, along with cognitive debriefing interviews with patients.
Results: 64 patients and 28 experts took part in this study. The conceptual model focused on six key concepts: pain, symptom, function, quality of life, expectation, and satisfaction. To match the model, the authors developed a total of 35 items.
Conclusion: A conceptual model and preliminary content for CTP was developed with substantial participation from patients and a multidisciplinary group of experts. The integration of patient and clinical perspectives ensured a comprehensive representation of all relevant disease experiences and the focus of clinical practice. With further refinement through psychometric testing, the CTP is positioned to provide a standardized, comprehensive measure for research specific to Chinese TKA patients.
{"title":"A multi-phase approach for developing a conceptual model and preliminary content for patient-reported outcome measurement in TKA patients: from a Chinese perspective.","authors":"Chao Xu, Jie Wei, Liang Li, Shuxin Yao, Xiaofeng Chang, Jianbing Ma, Lei Shang","doi":"10.1007/s11136-024-03850-6","DOIUrl":"10.1007/s11136-024-03850-6","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) are being used more frequently in total knee arthroplasty (TKA). By utilizing high-quality scales, surgeons can achieve a more comprehensive and accurate evaluation of the effectiveness of TKA surgery. Currently, there is no widely accepted conceptual model for TKA PROMs. The objective of this study is to fill this gap by developing a conceptual model and preliminary content for a PROM that is specifically designed for TKA patients in mainland China.</p><p><strong>Methods: </strong>The study design consisted of three stages: (1) a targeted literature review followed by the formation of a conceptual model pool; (2) qualitative data collection involving experts and patients, leading to the development of the preliminary Chinese TKA PROM (CTP); and (3) review of the CTP by experts using the Delphi method, along with cognitive debriefing interviews with patients.</p><p><strong>Results: </strong>64 patients and 28 experts took part in this study. The conceptual model focused on six key concepts: pain, symptom, function, quality of life, expectation, and satisfaction. To match the model, the authors developed a total of 35 items.</p><p><strong>Conclusion: </strong>A conceptual model and preliminary content for CTP was developed with substantial participation from patients and a multidisciplinary group of experts. The integration of patient and clinical perspectives ensured a comprehensive representation of all relevant disease experiences and the focus of clinical practice. With further refinement through psychometric testing, the CTP is positioned to provide a standardized, comprehensive measure for research specific to Chinese TKA patients.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"763-775"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11920321/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142771747","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}
Pub 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
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.
{"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}
Pub Date : 2025-03-01Epub Date: 2024-11-27DOI: 10.1007/s11136-024-03841-7
Parvin Mohebbi, Shahideh Jahanian Sadatmahalleh, Fazlollah Ahmadi, Ali Montazeri
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.
{"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}
Purpose: Older people (aged ≥ 65 years) are significant users of health and social care systems. However, many outcome measures for quality assessment and economic evaluation lack content validation for this population. Cognitive interviews are a key approach for generating content validity evidence. This systematic scoping review aimed to synthesise evidence on cognitive interviewing practices with older adults, including those with cognitive impairment and dementia, to determine the content validity of outcome measures used with these populations in health and social care settings.
Methods: A search was conducted across five databases, and results were uploaded to Covidence review management software. Two researchers performed screening and data extraction using a custom template. The initial search identified 8814 articles. After removing duplicates and conducting title and abstract screening, 105 articles remained. Full-text screening excluded 86 references, resulting in 19 included articles.
Results: Studies utilised various cognitive interviewing approaches, predominantly concurrent think-aloud combined with verbal probing. Inductive analysis based on Tourangeau's four-stage response model was commonly used for analysing verbal protocol data. Only one in four included studies indicated any allowances to alleviate cognitive burden for older participants. There was limited involvement of older people with cognitive impairment and dementia, but studies including these populations reported several modifications enhancing meaningful inclusion.
{"title":"Cognitive interviewing for assessing the content validity of older-person specific outcome measures for quality assessment and economic evaluation: a scoping review.","authors":"Kiri Lay, Claire Hutchinson, Jia Song, Rachel Milte, Jyoti Khadka, Julie Ratcliffe","doi":"10.1007/s11136-024-03849-z","DOIUrl":"10.1007/s11136-024-03849-z","url":null,"abstract":"<p><strong>Purpose: </strong>Older people (aged ≥ 65 years) are significant users of health and social care systems. However, many outcome measures for quality assessment and economic evaluation lack content validation for this population. Cognitive interviews are a key approach for generating content validity evidence. This systematic scoping review aimed to synthesise evidence on cognitive interviewing practices with older adults, including those with cognitive impairment and dementia, to determine the content validity of outcome measures used with these populations in health and social care settings.</p><p><strong>Methods: </strong>A search was conducted across five databases, and results were uploaded to Covidence review management software. Two researchers performed screening and data extraction using a custom template. The initial search identified 8814 articles. After removing duplicates and conducting title and abstract screening, 105 articles remained. Full-text screening excluded 86 references, resulting in 19 included articles.</p><p><strong>Results: </strong>Studies utilised various cognitive interviewing approaches, predominantly concurrent think-aloud combined with verbal probing. Inductive analysis based on Tourangeau's four-stage response model was commonly used for analysing verbal protocol data. Only one in four included studies indicated any allowances to alleviate cognitive burden for older participants. There was limited involvement of older people with cognitive impairment and dementia, but studies including these populations reported several modifications enhancing meaningful inclusion.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"605-619"},"PeriodicalIF":3.3,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142770954","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 : 2025-02-28DOI: 10.1007/s11136-025-03931-0
David A Snowdon, Lucy Marsh, Velandai Srikanth, Richard Beare, Rebecca Barnden, Emily Parker, Nadine E Andrew
Purpose: To test the feasibility of a co-designed PROMs collection system for hospitalised older adults.
Methods: A mixed-methods feasibility study was conducted sequentially across one acute and one sub-acute ward, over a 12-week period. Patients aged ≥ 60 years who discharged from hospital were eligible. The EQ-5D-5L with added items on fatigue and cognition was administered on discharge and at 3-6 months post-discharge. Administration was by either a research assistant or volunteer using a variety of modes (tablet computer, phone, SMS). Feasibility was evaluated using a feasibility framework to capture demand, implementation, practicality, and acceptability. Descriptive statistics were applied. Interviews were conducted with volunteers and analysed using deductive content analysis.
Results: Completion rates indicated high demand (discharge = 84%, n = 110/131; follow-up = 81%, n = 90/110). At discharge, most completed PROMs on the tablet (57%) and 9% were administered by a volunteer. Most required assistance using the tablet (67%) and the average time to administer PROMs was longest for the tablet (17.9 min, SD = 3.3), followed by phone (8.8 min, SD = 4.4) and SMS (1.3 min, SD = 0.5). Fewer participants reported acceptability with using the tablet (61%) compared to SMS (100%). At follow-up, most completed PROMs on the phone (82%) and the average time to administer PROMs was less than discharge (4.9 vs. 13.4 min). Volunteers reported administering PROMs to unwell patients was challenging.
Conclusion: A co-designed PROMs collection system demonstrated feasibility in hospitalised older adults with phone and SMS having greatest acceptability. Administration of PROMs by volunteers was not feasible.
Trial registration: ACTRN12623000576628. Registered 25 May 2023.
{"title":"Feasibility of implementing a codesigned patient reported outcome measures (PROMs) collection system for older adults in acute and sub-acute hospital settings.","authors":"David A Snowdon, Lucy Marsh, Velandai Srikanth, Richard Beare, Rebecca Barnden, Emily Parker, Nadine E Andrew","doi":"10.1007/s11136-025-03931-0","DOIUrl":"https://doi.org/10.1007/s11136-025-03931-0","url":null,"abstract":"<p><strong>Purpose: </strong>To test the feasibility of a co-designed PROMs collection system for hospitalised older adults.</p><p><strong>Methods: </strong>A mixed-methods feasibility study was conducted sequentially across one acute and one sub-acute ward, over a 12-week period. Patients aged ≥ 60 years who discharged from hospital were eligible. The EQ-5D-5L with added items on fatigue and cognition was administered on discharge and at 3-6 months post-discharge. Administration was by either a research assistant or volunteer using a variety of modes (tablet computer, phone, SMS). Feasibility was evaluated using a feasibility framework to capture demand, implementation, practicality, and acceptability. Descriptive statistics were applied. Interviews were conducted with volunteers and analysed using deductive content analysis.</p><p><strong>Results: </strong>Completion rates indicated high demand (discharge = 84%, n = 110/131; follow-up = 81%, n = 90/110). At discharge, most completed PROMs on the tablet (57%) and 9% were administered by a volunteer. Most required assistance using the tablet (67%) and the average time to administer PROMs was longest for the tablet (17.9 min, SD = 3.3), followed by phone (8.8 min, SD = 4.4) and SMS (1.3 min, SD = 0.5). Fewer participants reported acceptability with using the tablet (61%) compared to SMS (100%). At follow-up, most completed PROMs on the phone (82%) and the average time to administer PROMs was less than discharge (4.9 vs. 13.4 min). Volunteers reported administering PROMs to unwell patients was challenging.</p><p><strong>Conclusion: </strong>A co-designed PROMs collection system demonstrated feasibility in hospitalised older adults with phone and SMS having greatest acceptability. Administration of PROMs by volunteers was not feasible.</p><p><strong>Trial registration: </strong>ACTRN12623000576628. Registered 25 May 2023.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143524190","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 : 2025-02-28DOI: 10.1007/s11136-025-03936-9
Dandan Chen Kaptur, Yiqing Liu, Bradley Kaptur, Nicholas Peterman, Jinming Zhang, Justin L Kern, Carolyn Anderson
Few health-related constructs or measures have received a critical evaluation in terms of measurement equivalence, such as self-reported health survey data. Differential item functioning (DIF) analysis is crucial for evaluating measurement equivalence in self-reported health surveys, which are often hierarchical in structure. Traditional single-level DIF methods in this case fall short, making multilevel models a better alternative. We highlight the benefits of multilevel modeling for DIF analysis, when applying a health survey data set to multilevel binary logistic regression (for analyzing binary response data) and multilevel multinominal logistic regression (for analyzing polytomous response data), and comparing them with their single-level counterparts. Our findings show that multilevel models fit better and explain more variance than single-level models. This article is expected to raise awareness of multilevel modeling and help healthcare researchers and practitioners understand the use of multilevel modeling for DIF analysis.
{"title":"Examining differential item functioning in self-reported health survey data: via multilevel modeling.","authors":"Dandan Chen Kaptur, Yiqing Liu, Bradley Kaptur, Nicholas Peterman, Jinming Zhang, Justin L Kern, Carolyn Anderson","doi":"10.1007/s11136-025-03936-9","DOIUrl":"https://doi.org/10.1007/s11136-025-03936-9","url":null,"abstract":"<p><p>Few health-related constructs or measures have received a critical evaluation in terms of measurement equivalence, such as self-reported health survey data. Differential item functioning (DIF) analysis is crucial for evaluating measurement equivalence in self-reported health surveys, which are often hierarchical in structure. Traditional single-level DIF methods in this case fall short, making multilevel models a better alternative. We highlight the benefits of multilevel modeling for DIF analysis, when applying a health survey data set to multilevel binary logistic regression (for analyzing binary response data) and multilevel multinominal logistic regression (for analyzing polytomous response data), and comparing them with their single-level counterparts. Our findings show that multilevel models fit better and explain more variance than single-level models. This article is expected to raise awareness of multilevel modeling and help healthcare researchers and practitioners understand the use of multilevel modeling for DIF analysis.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143531858","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}