Quality of Life Research最新文献

{"title":"Psychometric properties of patient-reported outcome measures assessing recovery from hand fractures: a systematic review.","authors":"Christos Mousoulis, Andrew D Firth, Alanna Marson, Joel J Gagnier","doi":"10.1007/s11136-024-03768-z","DOIUrl":"10.1007/s11136-024-03768-z","url":null,"abstract":"<p><strong>Purpose: </strong>To extensively review Patient Reported Outcome Measures (PROMs) used to assess outcomes in persons with hand fractures in terms of their psychometric properties.</p><p><strong>Methods: </strong>A COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodological review was conducted. Six electronic databases were searched (Medline, Embase, Scopus, Web of Science, PsycINFO, CINAHL) for studies evaluating the psychometric properties of PROMs assessing recovery from hand fracture. Titles and abstracts, full text review, quality assessment and data extraction were performed by two reviewers. Any disagreements were resolved after review by a third, expert reviewer. Quality assessment of included studies was performed using the COSMIN checklist.</p><p><strong>Results: </strong>This COSMIN review found that there were only 4 studies that fulfilled the inclusion criteria in terms of assessing measurement properties of PROMs in hand fractures. Only the construct validity of the Disabilities of the Arm, Shoulder, and Hand (DASH), the Quick DASH (QDASH) and the Duruoz Hand Index (DHI), and the responsiveness of the DASH, the Patient Specific Functional Scale (PSFS), the Patient-Rated Wrist and Hand Evaluation (PRWHE) and the Michigan Hand Outcomes Questionnaire (MHQ) were assessed in these studies. The overall rating of the studies was assessed as insufficient or indeterminate and quality of evidence was assessed as moderate, low, or very low by our team.</p><p><strong>Conclusions: </strong>This study identified that there is a lack of evidence in the medical literature with regards to the measurement properties of PROMs in patients with hand fractures. The 4 included studies do not provide good quality data to support the use of these PROMS in patients with hand fractures. There is a need for more studies for more PROMs. This has important consequences for how outcomes will be measured in clinical studies in hand research and in clinical practice.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3213-3221"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142111347","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}

{"title":"Development of the celiac disease symptom diary version 2.1^© (CDSD 2.1^©) patient-reported outcome measure.","authors":"Kellee Howard, Daniel Adelman, Sonal Ghura, Sarah Acaster, Sarah Clifford, Ciaran P Kelly, Susan A Martin, Lisa M Meckley, Daniel A Leffler","doi":"10.1007/s11136-024-03799-6","DOIUrl":"10.1007/s11136-024-03799-6","url":null,"abstract":"<p><strong>Purpose: </strong>For patients with celiac disease (CeD), the only current management option is adherence to a strict gluten-free diet (GFD); however, many patients on a GFD continue to experience symptoms with a significant impact on quality of life. Potential new treatments for CeD are under development and a validated patient-reported outcome measure is required to evaluate their utility in clinical trials. The purpose of this article is to provide a history of the development of the Celiac Disease Symptom Diary (CDSD) 2.1^© for use in clinical trials.</p><p><strong>Methods: </strong>Qualitative and quantitative studies were conducted from 2010 to 2021, including concept elicitation and cognitive debriefing interviews with adult and adolescent participants with CeD (N = 93) diagnosed via biopsy and/or serology and input from eight interviews with CeD clinical experts. During these studies, different iterations of the CDSD were presented to the US Food and Drug Administration and the European Medicines Agency, and modifications were made in line with their feedback.</p><p><strong>Results: </strong>These studies ultimately led to the development of CDSD 2.1^©, a daily diary which focuses on key symptoms of CeD (abdominal pain, bloating, diarrhea, nausea and tiredness). This patient-reported outcome measure was readily understood by adult and adolescent participants with CeD and content validity was demonstrated in both populations.</p><p><strong>Conclusion: </strong>CDSD 2.1^© is a content-valid patient-reported outcome measure developed in accordance with best practices and regulatory guidance. A thorough exploration of the psychometric properties of CDSD 2.1^© for both adult and adolescent participants with CeD is ongoing to support utilization in clinical trials.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3275-3282"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11599373/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506682","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}

{"title":"Truth and dare: patients dare to tell the truth when using PROMs in clinical practice.","authors":"Lotte Haverman, Michiel A J Luijten, Amanda L Blackford, Kate Absolom, Ethan M Basch, Marion A J van Rossum, Vivian Engelen, Martha A Grootenhuis, Galina Velikova, Claire Snyder","doi":"10.1007/s11136-024-03772-3","DOIUrl":"10.1007/s11136-024-03772-3","url":null,"abstract":"<p><strong>Purpose: </strong>As patient-reported outcome measures (PROMs) are increasingly used in clinical practice for screening, monitoring, and management, the potential for response bias has been raised (e.g., over-reporting problems for attention, under-reporting to avoid treatment changes/discontinuation). We investigated whether patients systematically bias their responses when they know clinicians will review their PROM results.</p><p><strong>Methods: </strong>We conducted secondary analyses of three experimental studies evaluating PROMs in adult and pediatric care. Prior to PROM completion, intervention group patients were informed that the results would be shown to their clinicians (\"feedback\" arm), whereas control group patients were told that their clinicians would not see their responses (\"no feedback\" arm). Independent sample t-tests compared the \"feedback\" and \"no feedback\" arms' PROM scores at baseline. Effect sizes and 95% confidence intervals were estimated using Cohen's d statistics with Hedges' g correction, and effect sizes > 0.50 were considered clinically relevant.</p><p><strong>Results: </strong>Across the 29 domains assessed in the three studies, no between-arm differences reached an effect size of ± 0.50. Only 3/29 effect sizes exceeded ± 0.30. The confidence intervals for 14 domains included ± 0.50, with 4 favoring the \"no feedback\" arm and 10 favoring the \"feedback\" arm. Two domains reached statistical significance, one favoring the \"no feedback\" arm and one favoring the \"feedback\" arm.</p><p><strong>Conclusion: </strong>This study does not support the hypothesis that patients systematically bias their PROM responses if they know that clinicians will see their results. These findings support using PROMs in clinical practice as a valid mechanism to promote patient-centered care.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3299-3307"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11599350/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142372697","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}

{"title":"Mild to moderate cognitive impairment does not bias the Geriatric Depression Scale in a large US sample of older adults.","authors":"Antonia V Bennett, Mian Wang","doi":"10.1007/s11136-024-03802-0","DOIUrl":"10.1007/s11136-024-03802-0","url":null,"abstract":"<p><strong>Purpose: </strong>The Geriatric Depression Scale (GDS) is widely used to screen for depression in clinical practice and to assess symptoms of depression in research about older adults. To determine whether the 15-item GDS can be used in adults with dementia, this study investigated whether item- or test-level bias in the GDS-15 is associated with the respondent's level of cognitive impairment.</p><p><strong>Methods: </strong>Using a large U.S. sample of 24,674 adults, we first conducted sample matching procedures between the five groups defined by CDR® Dementia Staging Instrument scores to control for potential confounding effects of common demographic variables. Then, we employed confirmatory factor analysis (for single-group and configural-invariance models only) and item response theory models to test potential differential item/test functioning effects associated with the GDS-15 across the five CDR groups. Practical consequences of the identified biases were quantified using sample-based Cohen's d effect sizes and misclassification rates.</p><p><strong>Results: </strong>In general, people with higher CDR scores were older and had fewer years of education. In comparison to the normal cognition group (CDR-0), negligible biases in GDS-15 scores were found for the groups with questionable, mild, or moderate cognitive impairment (CDR-0.5/1/2). For individuals with severe cognitive impairment (CDR-3), their responses were inconsistent with the normal cognition group and their depression scores were significantly biased with a small-to-medium effect size.</p><p><strong>Conclusions: </strong>The GDS-15 can be used to assess depression in individuals with mild or moderate cognitive impairment, but not in individuals with severe cognitive impairment.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3435-3447"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142406805","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}

{"title":"Assessing the reliability of a novel cancer-specific multi-attribute utility instrument (FACT-8D) and comparing its validity to EQ-5D-5L in colorectal cancer patients.","authors":"Yiyin Cao, Huan Zhang, Nan Luo, Haofei Li, Ling Jie Cheng, Weidong Huang","doi":"10.1007/s11136-024-03774-1","DOIUrl":"10.1007/s11136-024-03774-1","url":null,"abstract":"<p><strong>Objective: </strong>To examine the test-retest reliability of the Functional Assessment of Cancer Therapy - 8 Dimension (FACT-8D) for the first time, and to conduct a head-to-head comparison of the distribution properties and validity between the FACT-8D and EQ-5D-5L in Colorectal Cancer (CRC) Patients.</p><p><strong>Methods: </strong>We conducted a longitudinal study on Chinese CRC patients, employing Functional Assessment of Cancer Therapy-General (FACT-G) and EQ-5D-5L at baseline, and FACT-G during follow-up (2-7 days from baseline). Utility scores for FACT-8D were derived from all available value sets (Australia, Canada and USA), while EQ-5D-5L scores were obtained from corresponding value sets for various countries. We assessed convergent validity using pairwise polychoric correlations between the FACT-8D and EQ-5D-5L; known-groups validity by discriminating participants' clinical characteristics, and effect size (ES) was tested; test-retest reliability for FACT-8D using kappa and weighted Kappa for choice consistency, and intraclass correlation coefficient (ICC) and Bland-Altman method for utility consistency.</p><p><strong>Results: </strong>Among the 287 patients with CRC at baseline, 131 were included in the retest analysis. The utility scores of FACT-8D were highly positively correlated with EQ-5D-5L across various country value sets (r = 0.65-0.77), and most of the dimensions of FACT-8D and EQ-5D-5L were positively correlated. EQ-5D-5L failed to discriminate known-groups in cancer stage across all value sets, whereas both were significant in FACT-8D (ES = 0.35-0.48, ES = 0.38-0.52). FACT-8D showed good test-retest reliability (Cohen's weighted Kappa = 0.494-0.722, ICC = 0.748-0.786).</p><p><strong>Conclusion: </strong>The FACT-8D can be used as a valid and reliable instrument for clinical evaluation of patients with CRC, outperforming EQ-5D-5L in differentiating clinical subgroups and showing promise for cancer practice and research.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3309-3322"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142120396","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}

{"title":"Impact of arterial stiffness on health-related quality of life in older Thai adults with treated HIV infection: a multicenter cohort study.","authors":"Amaraporn Rerkasem, Nuntisa Chotirosniramit, Arunrat Tangmunkongvorakul, Linda Aurpibul, Patumrat Sripan, Wason Parklak, Pak Thaichana, Kriengkrai Srithanaviboonchai, Kittipan Rerkasem","doi":"10.1007/s11136-024-03796-9","DOIUrl":"10.1007/s11136-024-03796-9","url":null,"abstract":"<p><strong>Purpose: </strong>Despite advancements in antiretroviral therapy (ART) that extend life expectancy, older adults with HIV (OAHIV) face elevated cardiovascular disease risks. This study examines the impact of arterial stiffness on health-related quality of life (HRQoL) among OAHIV in rural Northern Thailand.</p><p><strong>Methods: </strong>We conducted a 5-year prospective cohort study from 2015, including 338 OAHIV aged ≥ 50 without prior cardiovascular disease who received ART in 12 community hospitals in Chiang Mai. Arterial stiffness was assessed using Cardio-Ankle Vascular Index (CAVI), with values ≥ 8 indicating significant stiffness. HRQoL was measured using the MOS-HIV Health Survey at baseline, one year, and five years. Analysis adjusted for HIV/AIDS severity, cardiovascular comorbidities, and socioeconomic factors.</p><p><strong>Results: </strong>Elevated CAVI (≥ 8) was associated with lower HRQoL scores. The elevated CAVI group showed lower physical health summary scores (average difference:- 2.2 points, 95%CI: - 3.5 to - 0.9) and mental health summary scores (average difference: - 1.2 points, 95%CI: - 2.2 to - 0.3) compared to the normal CAVI group (CAVI < 8).</p><p><strong>Conclusion: </strong>Findings highlight the importance of routine screening for arterial stiffness and support the implementation of comprehensive care strategies that incorporate cardiovascular risk management. Such approaches could guide public health interventions and clinical practices to enhance the overall health and well-being of OAHIV, potentially through targeted cardiovascular risk reduction programs and personalized care plans. However, the study's regional focus in rural Northern Thailand and participant attrition over the five-year period limit the generalizability of the findings. Future research in diverse settings with larger sample sizes is needed to confirm these results.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3245-3257"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142473234","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}

{"title":"Quality of life impacts associated with comorbid insomnia and depression in adult population.","authors":"Phuong Hong Le, Long Khanh-Dao Le, Shantha M W Rajaratnam, Cathrine Mihalopoulos","doi":"10.1007/s11136-024-03793-y","DOIUrl":"10.1007/s11136-024-03793-y","url":null,"abstract":"<p><strong>Purpose: </strong>Health-related quality of life (HRQoL) impacts of insomnia and depression (as separated entities) have been well investigated in previous studies. However, little is known about the effect of comorbid insomnia and depression on HRQoL. This study aimed to assess the impacts of insomnia and depression, in combination or alone, on HRQoL in Australian adults.</p><p><strong>Methods: </strong>Data used in this study were obtained from the large-scale longitudinal Household, Income and Labour Dynamics in Australia (HILDA) survey. Insomnia was defined using key insomnia criteria of DSM-V. Depression was based on validated cut-off points of the Mental Health Inventory-5 (MHI-5) (scores ≤ 62) in the base case analysis. HRQoL expressed as utility scores (ranging from 0 to 1) were measured using the Short-Form 6-Dimension (SF-6D) converted from the SF-36 and valued using an Australian scoring algorithm. Multi-level modelling was applied to assess the effect of insomnia and/or depression on utility scores.</p><p><strong>Results: </strong>The study analysed 30,972 observations from 10,324 individuals (age [mean ± SD]: 45.7 ± 16.5, female: 54.6%). The proportion of individuals with insomnia only, depression only, and comorbid insomnia and depression was 11.3%, 11.6%, and 8.2%, respectively. The interaction effect suggested the combined impact of insomnia and depression on health-related quality of life beyond the sum of their individual effects. Marginal mean difference in utility scores for insomnia only, depression only, and the comorbidity relative to no insomnia or depression was -0.058 (SE: 0.003, Cohen's d: 0.420, small effect), -0.210 (SE: 0.003, Cohen's d: 1.530, large effect), and -0.291 (SE: 0.004, Cohen's d: 2.120, large effect), respectively.</p><p><strong>Conclusion: </strong>Comorbid depression and insomnia appear to have very large quality-of-life impacts. Furthermore, this is the first study that has estimated the magnitude of the impact of comorbid insomnia and depression on utility scores which can be utilised in future clinical or economic studies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3283-3298"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11599622/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142352638","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}

{"title":"Health-related quality of life and caregiver burden of pediatric patients with inborn errors of metabolism in Japan using EQ-5D-Y, PedsQL, and J-ZBI.","authors":"Keiko Konomura, Chikahiko Numakura, Akari Nakamura-Utsunomiya, Eri Hoshino, Go Tajima, Hironori Kobayashi, Kimitoshi Nakamura, Nobuyuki Shimozawa, Ryosuke Bo, Takeru Shiroiwa, Yosuke Shigematsu, Takashi Fukuda","doi":"10.1007/s11136-024-03775-0","DOIUrl":"10.1007/s11136-024-03775-0","url":null,"abstract":"<p><strong>Purpose: </strong>Inborn errors of metabolism (IEM) are known with poor long-term health concerns; however, the health-related quality of life (HRQoL) and the burden placed on families remain unclear. This study investigated the self- and proxy-reported HRQoL of pediatric patients with IEM with or without developmental disabilities and the burden placed on their caregivers.</p><p><strong>Methods: </strong>Patients with IEM aged 8-15 years and their caregivers were asked to respond to the Pediatric Quality of Life Inventory (PedsQL), EuroQoL five-dimension questionnaire for younger populations (EQ-5D-Y), and Japanese version of the Zarit Caregiver Burden Interview (J-ZBI). We compared EQ-5D-Y scores with matched EQ-5D-Y population norms. Intraclass correlation coefficients (ICC) for self and proxy HRQoL scores of those without developmental disabilities were calculated. Correlation coefficients of HRQoL proxy responses with J-ZBI score were estimated.</p><p><strong>Results: </strong>We included 66 patients with IEM (mean age, 11.5 years; males, 41.2%) in the study. The mean (± standard deviation) EQ-5D-Y scores without and with developmental disabilities were 0.957 (± 0.071) and 0.821 (± 0.175), respectively. The EQ-5D-Y scores significantly increased compared with the reference values (p < 0.01, effect size = 0.337). The ICC values were 0.331 and 0.477 for the EQ-5D-Y and PedsQL scores, respectively. HRQoL proxy scores had strong negative correlations with J-ZBI scores.</p><p><strong>Conclusion: </strong>The HRQoL of patients with IEM without developmental disabilities in our study was similar to that of the general Japanese population. The HRQoL of patients with IEM with developmental disabilities was low and associated with a tendency towards an increased burden of care.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3323-3333"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11599479/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142126514","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}

{"title":"A pilot cross-sectional investigation of symptom clusters and associations with patient-reported outcomes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition.","authors":"Breanna Weigel, Natalie Eaton-Fitch, Kiran Thapaliya, Sonya Marshall-Gradisnik","doi":"10.1007/s11136-024-03794-x","DOIUrl":"10.1007/s11136-024-03794-x","url":null,"abstract":"<p><strong>Background: </strong>Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is associated with long-term disability and poor quality of life (QoL). Cardinal ME/CFS symptoms (including post-exertional malaise, cognitive dysfunction and sleep disturbances) have been observed in Post COVID-19 Condition (PCC). To gain further insight into the potential role of ME/CFS as a post-COVID-19 sequela, this study investigates associations between symptoms and patient-reported outcomes, as well as symptom clusters.</p><p><strong>Methods: </strong>Participants included Australian residents aged between 18 and 65 years formally diagnosed with ME/CFS fulfilling the Canadian or International Consensus Criteria or PCC meeting the World Health Organization case definition. Validated, self-administered questionnaires collected participants' sociodemographic and illness characteristics, symptoms, QoL and functional capacity. Associations between symptoms and patient-reported outcomes were investigated with multivariate linear regression models. Hierarchical cluster analysis was performed to identify symptom clusters.</p><p><strong>Results: </strong>Most people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) were female (n = 48/60, 80.0% and n = 19/30, 63.3%, respectively; p = 0.12). PwME/CFS were significantly younger (x̄=41.75, s = 12.91 years) than pwPCC (x̄=48.13, s =10.05 years; p =0.017). Autonomic symptoms (notably dyspnoea) were associated with poorer scores in most patient-reported outcome domains for both cohorts. None of the four symptom clusters identified were unique to ME/CFS or PCC. Clusters were largely delineated by the presence of gastrointestinal and neurosensory symptoms, illness duration, ME/CFS criteria met and total symptoms.</p><p><strong>Conclusions: </strong>Illness duration may explain differences in symptom burden between pwME/CFS and pwPCC. PCC diagnostic criteria must be refined to distinguish pwPCC at risk of long-term ME/CFS-like illness and subsequently deliver necessary care and support.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3229-3243"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11599292/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142366342","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}

{"title":"The SMILE scale: a wellness behavioral tool for patients with cancer.","authors":"Laura B Vater, Ali Ajrouch, Patrick O Monahan, Laura Jennewein, Yan Han, Ahmad Karkash, Nasser H Hanna","doi":"10.1007/s11136-024-03781-2","DOIUrl":"10.1007/s11136-024-03781-2","url":null,"abstract":"<p><strong>Purpose: </strong>As cancer survivorship increases, there is a need for simple tools to measure and promote healthy behaviors. We created a wellness behavioral tool (the SMILE Scale) to encourage self-monitoring of wellness behaviors. This study aimed to determine the feasibility of collecting daily self-reported SMILE Scale data and weekly quality of life data among patients with cancer. We also aimed to measure the association between SMILE Scale responses and validated health-related quality of life (HRQOL) tools (PROMIS-29 + 2 and SymTrak-8) as a pilot test of the hypothesis that increased wellness behaviors may impact quality of life.</p><p><strong>Methods: </strong>We surveyed 100 patients with cancer at the Indiana University Simon Comprehensive Cancer Center. Participants were asked to complete daily SMILE Scale assessments over a two-week period, as well as weekly PROMIS-29 + 2 and SymTrak-8 surveys. The primary endpoint was the SMILE Scale completion rate. Secondary endpoints in this single-arm pilot study included correlations between the SMILE Scale and other HRQOL tools.</p><p><strong>Results: </strong>Daily completion rate of the SMILE Scale ranged from 57% to 65% of participants over a 14-day period. Among the 61% of participants who completed SMILE on day 1, 87% completed SMILE on 10 of 14 days. By end of study, participants who self-reported more wellness behaviors (i.e., higher daily SMILE scores) demonstrated significantly higher PROMIS physical health (p = 0.003), higher PROMIS mental health (p = 0.008), and lower (better) SymTrak total symptom burden (p = 0.006). Further, among those who completed at least 1 of 14 daily SMILE assessments, quality of life significantly improved over the two-week period for PROMIS mental health (p = 0.018) and SymTrak total symptom burden (p = 0.014).</p><p><strong>Conclusion: </strong>The SMILE Scale completion rate did not satisfy our pre-planned ≥70% threshold for feasibility; however, the rate for completing SMILE at least once during the 14 days (77%) met this threshold. Participants with higher average daily SMILE scores had significantly better scores across other validated HRQOL tools. While these results may be correlative and not causative, this suggests a potential physical and mental health benefit for delivering the SMILE Scale in clinical practice to help encourage healthy behaviors and warrants testing the SMILE Scale's impact in future studies.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3401-3408"},"PeriodicalIF":3.3,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142126515","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}