Quality of Life Research最新文献

{"title":"Symptom prevalence in patients with advanced heart failure and its association with quality of life and activities of daily living.","authors":"Moritz Blum, Karen McKendrick, Laura P Gelfman, Nathan E Goldstein","doi":"10.1007/s11136-024-03823-9","DOIUrl":"https://doi.org/10.1007/s11136-024-03823-9","url":null,"abstract":"<p><strong>Background: </strong>Quality of life (QOL) and functional status are two key outcomes for patients with advanced heart failure (HF). We examined the association of eleven symptoms with QOL and functional status impairment in patients with advanced HF.</p><p><strong>Methods and results: </strong>This was a retrospective analysis of baseline data from a multi-center, cluster-randomized controlled trial (NCT01459744) which enrolled patients with an implanted cardioverter-defibrillator and advanced HF at high-risk for mortality. Study instruments included the Condensed Memorial Symptom Assessment Scale, the Kansas City Cardiomyopathy Questionnaire QOL subscale, and the number of activities of daily living (ADL) patients had difficulties with. The study included 413 subjects. In generalized linear models which were adjusted for baseline characteristics, the total number of symptoms was significantly associated with worse QOL, as was the presence of each individual symptom, except constipation. Lack of energy demonstrated the strongest negative association with QOL. Similarly, the total number of symptoms was associated with a higher number of ADL difficulties (i.e., worse functional status). The presence of pain, lack of energy and drowsiness was individually associated with more ADL difficulties.</p><p><strong>Conclusion: </strong>Among patients with advanced HF, a higher number of symptoms and specific individual symptoms were associated with worse QOL and functional status.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583987","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":"Identification of meaningful individual-level change thresholds for worsening on the patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE®).","authors":"Minji K Lee, Sandra A Mitchell, Ethan Basch, Gina L Mazza, Blake T Langlais, Gita Thanarajasingam, Brenda F Ginos, Lauren Rogak, Eric A Meek, Jennifer Jansen, Allison M Deal, Philip Carr, Victoria S Blinder, Mattias Jonsson, Gita N Mody, Tito R Mendoza, Antonia V Bennett, Deborah Schrag, Amylou C Dueck","doi":"10.1007/s11136-024-03819-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03819-5","url":null,"abstract":"<p><strong>Background: </strong>We derived meaningful individual-level change thresholds for worsening in selected patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE®) items and their composite scores.</p><p><strong>Methods: </strong>We used two data sources, the PRO-TECT trial (Alliance AFT-39) that collected PRO-CTCAE data from adults with advanced cancer at 26 United States (U.S.) community oncology practices and the PRO-CTCAE validation study that collected PRO-CTCAE data from adults undergoing chemotherapy or radiation therapy at nine U.S. cancer centers or community oncology practices. Both studies administered selected PRO-CTCAE items and EORTC QLQ-C30 scales. Conceptually, relevant QLQ-C30 domains were used as anchors to estimate meaningful change thresholds for deterioration in corresponding PRO-CTCAE items and their composite scores. Items or composites with ǀρǀ ≥ 0.30 correlation with QLQ-C30 scales were included. Changes in PRO-CTCAE scores and composites were estimated for patients who met or exceeded a 10-point deterioration on the corresponding QLQ-C30 scale. Change scores were computed between baseline and the 3-month timepoint in PRO-TECT, and in the PRO-CTCAE validation study between baseline and a single follow-up visit that occurred between 1 and 7 weeks later. For each PRO-CTCAE item, change scores could range from - 4 to 4; for a composite, change scores could range from - 3 to 3.</p><p><strong>Results: </strong>Change scores in QLQ-C30 and PRO-CTCAE were available in 406 and 792 patients in PRO-TECT and the validation study, respectively. Across QLQ-C30 scales, the proportion of patients with a 10-point or greater worsening on QLQ-C30 ranged from 15 to 30% in the PRO-TECT data and 13% to 34% in the validation data. Across PRO-CTCAE items, anchor-based meaningful change estimates for deterioration ranged from 0.05 to 0.30 (mean 0.19) in the PRO-TECT data and from 0.19 to 0.53 (mean 0.36) in the validation data. For composites, they ranged from 0.06 to 0.27 (mean 0.17) in the PRO-TECT data and 0.22 to 0.51 (mean 0.37) in the validation data.</p><p><strong>Conclusion: </strong>In both datasets, the minimal meaningful individual-level change threshold for worsening was one point for all items and composite scores.</p><p><strong>Clinicaltrials: </strong>gov: NCT03249090 (AFT-39), NCT02158637 (MC1091).</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583949","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":"Health-related quality of life due to malaria: a systematic review.","authors":"Mônica Viegas Andrade, Kenya Noronha, Gilvan Ramalho Guedes, Bernardo Campolina Diniz, Valéria Andrade Silva, Aline de Souza, Lucas Resende de Carvalho, Paulo Estevão Braga, André Soares Motta-Santos, Nayara Abreu Julião, Daniel Nogueira da Silva, Henrique Bracarense, Marcia C Castro","doi":"10.1007/s11136-024-03822-w","DOIUrl":"https://doi.org/10.1007/s11136-024-03822-w","url":null,"abstract":"<p><strong>Purpose: </strong>This paper aims to conduct a systematic review (SR) to assess Health-Related Quality of Life (HRQoL) of malaria-exposed populations for different regions where malaria is endemic, considering any health measurements.</p><p><strong>Methods: </strong>An electronic search of the Medline, Lilacs, and Embase databases was conducted until February 2nd, 2024, to identify and select studies that evaluated HRQoL. No restrictions on place or language were made.</p><p><strong>Results: </strong>Thirty-seven studies were included, among them 21 focused on African countries. The most investigated HRQoL outcome associated with malaria was Disability-Adjusted Life Years (DALYs). These studies primarily aim to analyze the epidemiological burden of the disease or to conduct economic assessments. Only four studies conducted field research using specific instruments to assess the HRQoL of individuals experiencing malaria episodes. Three of them estimated EQ-5D utility index and found scores varying from 0.349 for severe malaria (Indonesia) to 0.74 (Nigeria). The health domains that are most affected by malaria are pain and discomfort and usual activities (EQ-5D instrument) and physical domains (WHOQOL-BREF). These results reflect the main malaria symptoms which are fever, headache, and generalized pain.</p><p><strong>Conclusion: </strong>This SR highlights a significant gap in understanding the quality of life among individuals experiencing malaria. Despite being an acute illness, recurrent episodes of malaria can lead to considerable loss in quality of life. Moreover, there are significant equity implications, as malaria remains endemic in socioeconomically disadvantaged populations.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583944","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":"Longitudinal validation of the PROMIS-16 in a sample of adults in the United States with back pain.","authors":"Anthony Rodriguez, Chengbo Zeng, Ron D Hays, Patricia M Herman, Maria O Edelen","doi":"10.1007/s11136-024-03826-6","DOIUrl":"https://doi.org/10.1007/s11136-024-03826-6","url":null,"abstract":"<p><strong>Purpose: </strong>This longitudinal study evaluates whether the Patient-Reported Outcomes Measurement and Information System (PROMIS)-16 domains capture average change over time comparable to the PROMIS-29 + 2 and have similar associations with change in overall health rating and two disability indices.</p><p><strong>Methods: </strong>Data were collected using Amazon's Mechanical Turk at baseline, 3 months, and 6 months among individuals reporting chronic low back pain. The analytic sample includes respondents who completed baseline and at least one follow-up assessment (N = 1137). We estimated latent growth models for eight PROMIS domains and compared growth parameters between the PROMIS-16 and PROMIS 29 + 2 with a z-test. Additionally, for each domain, random intercept and slope scores for individuals were computed for the PROMIS-29 + 2 and PROMIS-16 and correlated to estimate concordance. Using growth parameters for physical function and pain interference, we predicted average change in the Oswestry Disability Index (ODI), Roland Morris Disability Questionnaire (RMDQ), the overall health rating, and compared regression coefficients between the PROMIS-16 and PROMIS 29 + 2.</p><p><strong>Results: </strong>All growth models fit the data well. Intercept and slope parameters were statistically comparable (p's > 0.05) in magnitude across all domains between the PROMIS-16 and PROMIS-29 + 2. Correlations between random intercept and slope scores for individuals across domains were high. Additionally, the regression coefficients between slopes for pain interference and physical function and ODI, RMDQ, and overall health rating were statistically comparable (p's > 0.05) between the PROMIS-16 and PROMIS 29 + 2.</p><p><strong>Conclusion: </strong>Results provide between-level support for the longitudinal and predictive validity of the PROMIS-16. Similar average baseline scores and changes over time were observed between PROMIS-16 and PROMIS-29 + 2. Further, average change estimates comparably predicted average change in distal outcomes. This work provides evidence supporting the utility of the PROMIS-16 as a viable, short-profile option for use in clinical and research settings.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142591335","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":"Norwegian and Swedish value sets for the EORTC QLU-C10D utility instrument.","authors":"Gudrun Rohde, Jens Lehmann, Micha J Pilz, Leslye Rojas-Concha, Bernhard Holzner, Madeleine T King, Richard Norman, Georg Kemmler","doi":"10.1007/s11136-024-03824-8","DOIUrl":"https://doi.org/10.1007/s11136-024-03824-8","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to develop utility weights for the European Organization for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument, tailored to the Norwegian and Swedish populations. The utility weights are intended for use in the specific welfare contexts of Norway and Sweden to support more precise healthcare decision-making in cancer treatment and care.</p><p><strong>Methods: </strong>This cross-sectional study included 1019 Norwegian and 1048 Swedish participants representative in age and gender of the two general populations. Participants completed a discrete choice experiment involving 960 choice sets, each consisting of two EORTC QLU-C10D health states described by the instrument's domains and the duration of each state. Utility weights were calculated using generalized estimation equation models, and non-monotonic levels were merged to ensure consistent valuation.</p><p><strong>Results: </strong>In the Norwegian participants, the largest utility decrements were seen for the domain of physical functioning (decrement of - 0.263 for highest level \"very much\"), followed by pain (decrement - 0.205 for level \"very much\") and role functioning (- 0.139). Among the cancer-specific domains, nausea had the largest utility decrement (- 0.124). In the Swedish participants, the largest utility decrements were also observed for physical functioning (- 0.207 for the response \"very much\"), followed by pain (- 0.139), role functioning (- 0.133), and nausea (- 0.119). Emotional functioning also exhibited a sizable utility decrement (- 0.115).</p><p><strong>Conclusion: </strong>This study provides the first set of utility weights for the EORTC QLU-C10D specific to Norway and Sweden, reflecting the unique health preferences of these populations. The generated utility decrements can inform cost-utility analyses and optimize resource allocation in cancer care within the Norwegian and Swedish healthcare systems.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583931","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":"Norms for the EQ-5D-5L among the general adult population in Alberta, Canada.","authors":"Fatima Al Sayah, Arafat Alam, Hilary Short, Arto Ohinmaa, Markus Lahtinen, Shaun Malo, Jeffrey A Johnson","doi":"10.1007/s11136-024-03804-y","DOIUrl":"https://doi.org/10.1007/s11136-024-03804-y","url":null,"abstract":"<p><strong>Purpose: </strong>To present EQ-5D-5L population norms for the general adult population in Alberta, Canada.</p><p><strong>Methods: </strong>We analyzed data from 11 population-based surveys conducted in Alberta between 2012 and 2021. By applying appropriate sampling weights, we estimated normative data for the EQ-5D-5L dimensions, index scores, and visual analogue scale (VAS) scores. This analysis was conducted for the overall population as well as for subgroups categorized by age, sex, provincial health zones, and 17 chronic conditions.</p><p><strong>Results: </strong>The analysis included data from 60,447 respondents (ages 18-99; 51.4% female) across various survey waves, revealing minimal variations in sample characteristics and EQ-5D-5L scores over time. The most frequently reported problems were pain/discomfort (62.2%) and anxiety/depression (41.7%), while 22.5% of respondents reported no issues on any dimension. The mean (SD) EQ-5D-5L index score was 0.845 (0.137), and the mean EQ VAS score was 77.4 (16.7). There was a notable increase in the proportion of reported problems across all dimensions with age, except for anxiety/depression, which showed a decline with advancing age. Females reported slightly more problems across all dimensions compared to males. Individuals with chronic pain had the lowest EQ-5D-5L index scores, followed by those with anxiety and depression, while the lowest EQ VAS scores were observed in individuals with congestive heart failure, kidney disease, and chronic obstructive pulmonary disease.</p><p><strong>Conclusion: </strong>This study provides EQ-5D-5L norms for the adult population in Alberta. These reference values can be used to benchmark patients' outcomes as well as to establish burden of illness in this population and facilitate the interpretation of EQ-5D-5L scores in various applications.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142564748","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":"A systematic review of quality of life (QoL) studies using the CASP scale in older adults.","authors":"Gabriela L Frias-Goytia, Cristina Lojo-Seoane, Sabela C Mallo, Ana Nieto-Vieites, Onésimo Juncos-Rabadán, Arturo X Pereiro","doi":"10.1007/s11136-024-03750-9","DOIUrl":"10.1007/s11136-024-03750-9","url":null,"abstract":"<p><strong>Purpose: </strong>A systematic review of the use of the CASP Quality of Life (QoL) scale in older adults was carried out.</p><p><strong>Methods: </strong>Articles were searched using PsycINFO, Web of Science (WOS), Scopus and Medline databases. Observational or experimental studies using any version of the CASP to analyze QoL in adults aged 50 and over and studies focusing on the psychometric properties of the CASP instrument or identifying factors associated with QoL scores. The quality of the studies was assessed using COSMIN and STROBE.</p><p><strong>Results: </strong>A total of 519,339 participants were considered in the 51 studies selected. The 19- and 12-item CASP versions showed high internal consistency and low-to-moderate convergent validity. Best construct validity was reported for the 12-item short version generating a three-factor model (control/autonomy, pleasure & self-realization) and only modest evidence is provided for their cross-cultural validity. Longitudinal and cross-sectional evidence showed (1) a significant decrease in CASP scores at very old ages; (2) an absence of relationship with gender, which, however, may play a moderating role between QoL and health; (3) significant associations between CASP scores and health, psychosocial and socio-economic outcomes.</p><p><strong>Conclusion: </strong>The quality of the results was hindered by the lack of relevant information in some studies as well as by the proliferation of versions of the instrument. Nevertheless, we conclude that the CASP scale can capture the complex and multidimensional nature of QoL in older adults by reporting satisfaction of needs that go beyond that go beyond those related to health.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"2915-2927"},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898149","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":"Overall side effect assessment of oxaliplatin toxicity in rectal cancer patients in NRG oncology/NSABP R04.","authors":"John Devin Peipert, Jessica Roydhouse, Mourad Tighiouart, Norah Lynn Henry, Sungjin Kim, Ron D Hays, Andre Rogatko, Greg Yothers, Patricia A Ganz","doi":"10.1007/s11136-024-03746-5","DOIUrl":"10.1007/s11136-024-03746-5","url":null,"abstract":"<p><strong>Purpose: </strong>Regulatory guidance suggests capturing patient-reported overall side effect impact in cancer trials. We examined whether the Functional Assessment of Cancer Therapy (FACT) GP5 item (\"I am bothered by side effects of treatment\") post-neoadjuvant chemotherapy/radiotherapy differed between oxaliplatin vs. non- oxaliplatin arms in the National Surgical Adjuvant Breast and Bowel Project (NSABP) R-04 trial of stage II-III rectal cancer patients.</p><p><strong>Methods: </strong>The R-04 neoadjuvant trial compared local-regional tumor control between patients randomized to receive 5-fluorouracil or capecitabine with radiation, with or without oxaliplatin (4 treatment arms). Participants completed surveys at baseline and immediately after chemoradiotherapy. GP5 has a 5-point response scale: \"Not at all\" (0), \"A little bit\" (1), \"Somewhat\" (2), \"Quite a bit\" (3), and \"Very much\" (4). Logistic regression compared the odds of reporting moderate-high side effect impact (GP5 2-4) between patients receiving oxaliplatin or not after chemoradiotherapy, controlling for relevant patient characteristics. We examined associations between GP5 and other patient-reported outcomes reflecting side effects.</p><p><strong>Results: </strong>Analyses were performed among 1132 study participants. Participants receiving oxaliplatin were 1.58 times (95% CI: 1.22-2.05) more likely to report moderate-high side effect bother at post-chemotherapy/radiation. In both arms, worse overall side effect impact was associated with patient-reported diarrhea, nausea, vomiting, and peripheral sensory neuropathy (p < 0.01 for all).</p><p><strong>Conclusion: </strong>This secondary analysis of R-04 found that GP5 distinguished between patients receiving oxaliplatin or not as part of their post-neoadjuvant chemoradiotherapy, adding patient-centric evidence on the reduced tolerability of oxaliplatin and demonstrating that GP5 is sensitive to known toxicity differences between treatments.</p><p><strong>Clinicaltrials: </strong>GOV: NCT00058474.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3069-3079"},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11541265/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141856291","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":"Symptom burden and quality of life among patient and family caregiver dyads in advanced cancer.","authors":"Katrina R Ellis, Allison Furgal, Feyisayo Wayas, Alexis Contreras, Carly Jones, Sierra Perez, Dolapo Raji, Madeline Smith, Charlotte Vincent, Lixin Song, Laurel Northouse, Aisha T Langford","doi":"10.1007/s11136-024-03743-8","DOIUrl":"10.1007/s11136-024-03743-8","url":null,"abstract":"<p><strong>Purpose: </strong>Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. However, limited studies have examined parallel patient and caregiver symptom burden and associations with their own and each other's quality of life (QOL). This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and QOL).</p><p><strong>Methods: </strong>This study was a secondary analysis of self-reported baseline survey data collected from a randomized clinical trial of 484 adult advanced cancer patients and their caregivers. Latent class analysis and factor analysis were used to identify symptom clusters. Bivariate statistics tested associations between symptom clusters and demographic, clinical, and psychosocial variables.</p><p><strong>Results: </strong>The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Low, moderate, and high symptom burden subgroups were identified at the patient, caregiver, and dyad level. Age, gender, race, income, chronic conditions, cancer type, and treatment type were associated with symptom burden subgroups. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup.</p><p><strong>Conclusion: </strong>Patient and caregiver symptom burden influence their own and each other's QOL. These findings reinforce the need to approach symptom management from a dyadic perspective.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3027-3038"},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141752504","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":"Living with faecal incontinence: a qualitative investigation of patient experiences and preferred outcomes through semi-structured interviews.","authors":"S L Assmann, D Keszthelyi, S O Breukink, M L Kimman","doi":"10.1007/s11136-024-03756-3","DOIUrl":"10.1007/s11136-024-03756-3","url":null,"abstract":"<p><strong>Purpose: </strong>Faecal incontinence (FI) is a prevalent and debilitating anorectal problem causing embarrassment, anxiety, and social isolation, diminishing quality of life. At present there is no optimal treatment option for FI. Consequently, treatments primarily focus on symptom reduction and improving quality of life. Understanding patient experiences and outcomes they seek from treatment is crucial for improving care. This study aims to explore how FI impacts patients' lives and identify important treatment outcomes as part of the development of a Core Outcome Set (COS).</p><p><strong>Methods: </strong>Patients with FI were recruited from outpatient clinics in the Netherlands. Semi-structured interviews were performed, audio recorded, transcribed per verbatim and coded. Thematic analysis was performed to identify (sub)themes and categories relevant to the patients.</p><p><strong>Results: </strong>Twelve interviews were conducted before saturation was reached (75% female, 25% male, mean age 63, range 39-83 year). Four main themes emerged 'Physical symptoms', 'Impact on daily life', 'Emotional impact' and 'Coping'. Patients expressed how FI severely limits daily activities and emotional wellbeing. Treatment priorities centred on resuming normal activities rather than solely on symptom reduction.</p><p><strong>Conclusion: </strong>The impact of FI extends far beyond uncontrolled loss of faeces, affecting psychological, emotional, and social wellbeing. Patients prioritise outcomes focussed on reclaiming normalcy and independence rather than focusing on physical symptoms alone. Integrating these patient-centered outcomes in future studies could enhance treatment satisfaction and patient-perceived treatment success. Furthermore, the outcomes identified in this study can be included in a Delphi survey alongside other relevant outcomes, paving the way for the development of a COS.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":" ","pages":"3121-3129"},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11541390/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141983079","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}