Pub Date : 2025-12-24DOI: 10.1186/s12955-025-02440-5
Marjolein F Lansbergen, Ian P Smith, Evelien N van Alphen, Simone Augustinus, Ilse J M Fransen, Johanna W Wilmink, Marc G Besselink, I Quintus Molenaar, Marjolein Y V Homs, Ignace H J T de Hingh, Bert A Bonsing, Judith de Vos-Geelen, Brigitte C M Haberkorn, Pauline A J Vissers, Pythia T Nieuwkerk, Maarten F Bijlsma, Geert W J Frederix, Hanneke W M van Laarhoven
Background: Pancreatic cancer has an aggressive nature, and treatment severely impacts patients' quality of life. There is limited understanding how patients weigh treatment benefits against side effects, which hampers the development of patient-centered care and shared decision-making programs.
Methods: Two discrete-choice surveys were designed: one comprising pancreatic cancer patients with (borderline) resectable disease (early-stage disease), and one including patients with non-resectable or metastatic disease (late-stage disease). Relevant criteria for describing treatments were identified by literature review and validated through patient and expert interviews. Selected criteria were likelihood of adverse events causing hospitalization, impact on daily functioning, gastrointestinal symptoms, life expectancy and frequency of hospital visits. Interim analysis was executed after 109 inclusions, optimizing the choice task combinations. Patients were recruited from a local center and a nationwide questionnaire project.
Results: Overall, 428 surveys were sent out and 53% of the participants answered at least one choice task. This included 165 participants with early-stage disease and 62 participants with late-stage disease. Most participants had treatment experience before completing the survey. For both disease stages, participants had a significant preference for the treatment options instead of receiving best supportive care only, although there was significant heterogeneity for this preference among the participants. Life expectancy was the most important treatment characteristic of the pre-selected criteria.
Conclusions: Pancreatic cancer patients, both with early-stage and late-stage disease, choose for anti-cancer treatment over best supportive care and value life expectancy as the most important treatment attribute, although significant differences exist between patients.
{"title":"Patient preferences for pancreatic cancer treatment (PERSEUS): a multicenter discrete choice experiment.","authors":"Marjolein F Lansbergen, Ian P Smith, Evelien N van Alphen, Simone Augustinus, Ilse J M Fransen, Johanna W Wilmink, Marc G Besselink, I Quintus Molenaar, Marjolein Y V Homs, Ignace H J T de Hingh, Bert A Bonsing, Judith de Vos-Geelen, Brigitte C M Haberkorn, Pauline A J Vissers, Pythia T Nieuwkerk, Maarten F Bijlsma, Geert W J Frederix, Hanneke W M van Laarhoven","doi":"10.1186/s12955-025-02440-5","DOIUrl":"10.1186/s12955-025-02440-5","url":null,"abstract":"<p><strong>Background: </strong>Pancreatic cancer has an aggressive nature, and treatment severely impacts patients' quality of life. There is limited understanding how patients weigh treatment benefits against side effects, which hampers the development of patient-centered care and shared decision-making programs.</p><p><strong>Methods: </strong>Two discrete-choice surveys were designed: one comprising pancreatic cancer patients with (borderline) resectable disease (early-stage disease), and one including patients with non-resectable or metastatic disease (late-stage disease). Relevant criteria for describing treatments were identified by literature review and validated through patient and expert interviews. Selected criteria were likelihood of adverse events causing hospitalization, impact on daily functioning, gastrointestinal symptoms, life expectancy and frequency of hospital visits. Interim analysis was executed after 109 inclusions, optimizing the choice task combinations. Patients were recruited from a local center and a nationwide questionnaire project.</p><p><strong>Results: </strong>Overall, 428 surveys were sent out and 53% of the participants answered at least one choice task. This included 165 participants with early-stage disease and 62 participants with late-stage disease. Most participants had treatment experience before completing the survey. For both disease stages, participants had a significant preference for the treatment options instead of receiving best supportive care only, although there was significant heterogeneity for this preference among the participants. Life expectancy was the most important treatment characteristic of the pre-selected criteria.</p><p><strong>Conclusions: </strong>Pancreatic cancer patients, both with early-stage and late-stage disease, choose for anti-cancer treatment over best supportive care and value life expectancy as the most important treatment attribute, although significant differences exist between patients.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"122"},"PeriodicalIF":3.4,"publicationDate":"2025-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12729412/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145827717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-23DOI: 10.1186/s12955-025-02467-8
Xuejiao Zheng, Liying Zhou, Baiyan Li, Lei Dong, Yuna Li, Catriona R Mayland, Maho Aoyama, Mitsunori Miyashita
{"title":"Evaluating quality of care for dying patients from the perspective of bereaved relatives: validation of the Chinese version of the international care of the dying evaluation.","authors":"Xuejiao Zheng, Liying Zhou, Baiyan Li, Lei Dong, Yuna Li, Catriona R Mayland, Maho Aoyama, Mitsunori Miyashita","doi":"10.1186/s12955-025-02467-8","DOIUrl":"10.1186/s12955-025-02467-8","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"123"},"PeriodicalIF":3.4,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12750684/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145819026","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: To validate and compare the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China.
Methods: A quota sampling method was used to recruit a representative sample, social-demographic characteristics, self-reported EQ-5D-5L and SF-6Dv2 responses were collected through online survey. Test-retest reliability and the agreement between EQ-5D-5L and SF-6Dv2 utility values were assessed using the intraclass correlation coefficient (ICC) and the Bland-Altman plot. Hypotheses testing including convergent validity and known-group validity were examined using Spearman's rank correlation and effect sizes, respectively. Sensitivity was compared using relative efficiency and receiver operating characteristic.
Results: A total of 600 respondents (53.67% male; mean age 60 years; 90% type 2, 10% type 1 diabetes) were included in this study. A higher ceiling effect was observed for EQ-5D-5L than for SF-6Dv2 (10.5% vs. 0.5%). The mean (SD) utility was 0.771 (0.196) for EQ-5D-5L and 0.671 (0.153) for SF-6Dv2. Agreement between the two instruments was good with an ICC of 0.776. The ICC values for the test-retest analysis were 0.982 for EQ-5D-5L and 0.986 for SF-6Dv2 among the subgroup (N = 100). The Spearman's rank correlation (range: 0.312-0.661) indicated an acceptable convergent validity between the dimensions of EQ-5D-5L and SF-6Dv2. Hypotheses for known-group validity were fulfilled in both instruments. The EQ-5D-5L showed basically equivalent discriminative capacities with the SF-6Dv2 (ES: 0.92-2.08 vs. 1.03-2.05). The SF-6Dv2 had 14.7-445.8% higher efficiency than the EQ-5D-5L at revealing differences in self-reported health status, except for the group dichotomized by "very good, good, fair or bad versus very bad".
Conclusions: EQ-5D-5L and SF-6Dv2 showed generally comparable reliability, validity, and sensitivity in this sample of Chinese patients with diabetes. However, the utility values derived from the two instruments differed, indicating that they may not be used interchangeably. Further research is needed to evaluate and compare their responsiveness.
目的:验证和比较中国糖尿病患者EQ-5D-5L和SF-6Dv2的测量特性。方法:采用定额抽样的方法,通过网络调查收集社会人口学特征、自述EQ-5D-5L和SF-6Dv2的回答。使用类内相关系数(ICC)和Bland-Altman图评估重测信度和EQ-5D-5L与SF-6Dv2效用值之间的一致性。假设检验包括收敛效度和已知组效度分别使用Spearman的秩相关和效应量进行检验。灵敏度采用相对效率和接收机工作特性进行比较。结果:共纳入600例调查对象,其中男性53.67%,平均年龄60岁,2型糖尿病占90%,1型糖尿病占10%。EQ-5D-5L的上限效应高于SF-6Dv2(10.5%比0.5%)。EQ-5D-5L的平均(SD)效用为0.771 (0.196),SF-6Dv2为0.671(0.153)。两个工具之间的一致性很好,ICC值为0.776。亚组(N = 100) EQ-5D-5L和SF-6Dv2的复测分析ICC值分别为0.982和0.986。Spearman等级相关(0.312-0.661)表明EQ-5D-5L与SF-6Dv2具有可接受的收敛效度。两种工具均满足已知组效度的假设。EQ-5D-5L与SF-6Dv2的辨别能力基本相当(ES: 0.92-2.08 vs. 1.03-2.05)。SF-6Dv2比EQ-5D-5L在揭示自我报告健康状况差异方面的效率高14.7-445.8%,但“非常好”、“好”、“一般”或“差”与“非常差”二分类组除外。结论:EQ-5D-5L和SF-6Dv2在中国糖尿病患者样本中具有相当的信度、效度和敏感性。然而,两种工具的效用值不同,这表明它们不能互换使用。需要进一步的研究来评估和比较它们的反应能力。
{"title":"Comparison of the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China.","authors":"Meixuan Li, Shitong Xie, Tuoer Li, Wenbo He, Yanfei Li, Xu Hui, Yanan Wu, Fuxing Shi, Jing Wu, Jinhui Tian, Xiuxia Li, Kehu Yang","doi":"10.1186/s12955-025-02466-9","DOIUrl":"10.1186/s12955-025-02466-9","url":null,"abstract":"<p><strong>Objective: </strong>To validate and compare the measurement properties of the EQ-5D-5L and SF-6Dv2 among patients with diabetes in China.</p><p><strong>Methods: </strong>A quota sampling method was used to recruit a representative sample, social-demographic characteristics, self-reported EQ-5D-5L and SF-6Dv2 responses were collected through online survey. Test-retest reliability and the agreement between EQ-5D-5L and SF-6Dv2 utility values were assessed using the intraclass correlation coefficient (ICC) and the Bland-Altman plot. Hypotheses testing including convergent validity and known-group validity were examined using Spearman's rank correlation and effect sizes, respectively. Sensitivity was compared using relative efficiency and receiver operating characteristic.</p><p><strong>Results: </strong>A total of 600 respondents (53.67% male; mean age 60 years; 90% type 2, 10% type 1 diabetes) were included in this study. A higher ceiling effect was observed for EQ-5D-5L than for SF-6Dv2 (10.5% vs. 0.5%). The mean (SD) utility was 0.771 (0.196) for EQ-5D-5L and 0.671 (0.153) for SF-6Dv2. Agreement between the two instruments was good with an ICC of 0.776. The ICC values for the test-retest analysis were 0.982 for EQ-5D-5L and 0.986 for SF-6Dv2 among the subgroup (N = 100). The Spearman's rank correlation (range: 0.312-0.661) indicated an acceptable convergent validity between the dimensions of EQ-5D-5L and SF-6Dv2. Hypotheses for known-group validity were fulfilled in both instruments. The EQ-5D-5L showed basically equivalent discriminative capacities with the SF-6Dv2 (ES: 0.92-2.08 vs. 1.03-2.05). The SF-6Dv2 had 14.7-445.8% higher efficiency than the EQ-5D-5L at revealing differences in self-reported health status, except for the group dichotomized by \"very good, good, fair or bad versus very bad\".</p><p><strong>Conclusions: </strong>EQ-5D-5L and SF-6Dv2 showed generally comparable reliability, validity, and sensitivity in this sample of Chinese patients with diabetes. However, the utility values derived from the two instruments differed, indicating that they may not be used interchangeably. Further research is needed to evaluate and compare their responsiveness.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"13"},"PeriodicalIF":3.4,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145819056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Exploring assessment measures including psychological aspects in adults with acquired Peripheral Facial Palsy (PFP): a scoping review.","authors":"Rocio Polanco-Fernandez, Patricia Penas, Ioseba Iraurgi","doi":"10.1186/s12955-025-02455-y","DOIUrl":"10.1186/s12955-025-02455-y","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"124"},"PeriodicalIF":3.4,"publicationDate":"2025-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12751823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145809985","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-20DOI: 10.1186/s12955-025-02468-7
Farah Pelouto, Juanita A Haagsma, Bart C Jacobs, Caroline B Terwe
{"title":"Correction: Development of a PROM set for patients with Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP): study protocol.","authors":"Farah Pelouto, Juanita A Haagsma, Bart C Jacobs, Caroline B Terwe","doi":"10.1186/s12955-025-02468-7","DOIUrl":"10.1186/s12955-025-02468-7","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"121"},"PeriodicalIF":3.4,"publicationDate":"2025-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12718457/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145800460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-18DOI: 10.1186/s12955-025-02463-y
Sujeong Mun, Jeong-Kyun Kim, Younghwa Baek, Kihyun Park, Siwoo Lee
{"title":"Evening preference with evening-type rest-activity rhythm: a risk for poor quality of life.","authors":"Sujeong Mun, Jeong-Kyun Kim, Younghwa Baek, Kihyun Park, Siwoo Lee","doi":"10.1186/s12955-025-02463-y","DOIUrl":"10.1186/s12955-025-02463-y","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"12"},"PeriodicalIF":3.4,"publicationDate":"2025-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12829173/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145781150","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Validation of the Chronic Illness Adjustment Scale in Turkish patients with chronic disease.","authors":"Gülcan Bahçecioğlu Turan, Zülfünaz Özer, Bahar Çiftçi","doi":"10.1186/s12955-025-02465-w","DOIUrl":"10.1186/s12955-025-02465-w","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"11"},"PeriodicalIF":3.4,"publicationDate":"2025-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12821168/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145774441","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-15DOI: 10.1186/s12955-025-02441-4
Joseph Kwon, Rakhee Raghunandan, Son Hong Nghiem, Kirsten Howard, Emily Lancsar, Elisabeth Huynh, Martin Howell, Stavros Petrou, Sarah Smith
{"title":"Rasch analysis of the self-reported PedsQL™ 4.0 Generic Core Scales by Australian children.","authors":"Joseph Kwon, Rakhee Raghunandan, Son Hong Nghiem, Kirsten Howard, Emily Lancsar, Elisabeth Huynh, Martin Howell, Stavros Petrou, Sarah Smith","doi":"10.1186/s12955-025-02441-4","DOIUrl":"10.1186/s12955-025-02441-4","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"120"},"PeriodicalIF":3.4,"publicationDate":"2025-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12706910/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145762735","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-13DOI: 10.1186/s12955-025-02462-z
Azhar Iqbal, Farooq Ahmad Chaudhary, Saud Hamdan Almaeen, Muhsen Alnasser, Nadeem Baig, Yasir Dilshad Siddiqui, Osama Khattak, Mohammed Mustafa, Mohmed Isaqali Karobari
{"title":"Oral health-related quality of life and its determinants among the Saudi adult population: a cross-sectional analytical study.","authors":"Azhar Iqbal, Farooq Ahmad Chaudhary, Saud Hamdan Almaeen, Muhsen Alnasser, Nadeem Baig, Yasir Dilshad Siddiqui, Osama Khattak, Mohammed Mustafa, Mohmed Isaqali Karobari","doi":"10.1186/s12955-025-02462-z","DOIUrl":"10.1186/s12955-025-02462-z","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"10"},"PeriodicalIF":3.4,"publicationDate":"2025-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12817761/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145751794","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-12DOI: 10.1186/s12955-025-02464-x
Richard Huan Xu, Chenxi Yang, Thao Thai, Eliza Laiyi Wong, Shamay S M Ng, Richard Norman
{"title":"The Recovering Quality of Life - Utility Index (ReQoL-UI): the Hong Kong valuation study.","authors":"Richard Huan Xu, Chenxi Yang, Thao Thai, Eliza Laiyi Wong, Shamay S M Ng, Richard Norman","doi":"10.1186/s12955-025-02464-x","DOIUrl":"10.1186/s12955-025-02464-x","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":" ","pages":"9"},"PeriodicalIF":3.4,"publicationDate":"2025-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12817455/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145742216","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}