Psycho‐Oncology最新文献

{"title":"Psychometric Properties of the Generalized Anxiety Disorder Scale (GAD-7) in Older Adults With Advanced Cancer.","authors":"Rebecca M Saracino, Lee A Kehoe, Michael B Sohn, Lu Wang, Supriya Mohile, Megan Wells, Karen Mustian, Gary Morrow, Thomas Bradley, Adedayo Onitilo, Jeffrey Giguere, Kelly M McConnell","doi":"10.1002/pon.70012","DOIUrl":"10.1002/pon.70012","url":null,"abstract":"<p><strong>Objectives: </strong>Over half of new cancer diagnoses occur in patients aged 65 or older, with up to 40% experiencing anxiety. The American Society of Clinical Oncology recommends using the Generalized Anxiety Disorder Scale (GAD-7) for anxiety screening, but the GAD-7 psychometric properties in this population are unknown. This study examined the GAD-7's reliability, validity, and item parameters, comparing its utility with the GAD-2 in older adults with cancer.</p><p><strong>Methods: </strong>This cross-sectional secondary analysis of a nationwide multi-site two-arm cluster randomized trial in older adults (≥ 70) with advanced cancer. The GAD-7 was administered at baseline. Properties were evaluated with Cronbach's α, Pearson correlation coefficients, and a 2-parameter logistic model. Logistic regression models compared the GAD-2 and GAD-7.</p><p><strong>Results: </strong>The sample included 718 participants (Mean age = 77, SD = 5) with mild anxiety (M = 3.74, SD = 4.74). Internal consistency was strong (Cronbach's alpha = 0.89) and item-total correlations ranged 0.53 to 0.78. Item 2 (Not being able to stop or control worrying) was the most discriminating and item 5 (Being so restless that it is hard to sit still) was least discriminating. Area Under the Curve (AUC) analyses demonstrated the GAD-2 had a 0.93-0.96 AUC.</p><p><strong>Conclusions: </strong>Establishing the psychometric properties of anxiety screening measures is crucial in the older adults with cancer to maximize referral efficiency and accuracy. This study indicates that the GAD-7 is reliable and valid for older adults with cancer. Analyses suggest the GAD-2 may be as sufficient as the GAD-7 in identifying anxiety in older adults with cancer, thereby reducing assessment burden.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142558604","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":"The Efficacy of Laughter Therapy on Psychological Symptoms in People With Cancer: A Systematic Review and Meta-Analysis of Randomized Controlled Studies.","authors":"Guijiao Lin, Liu Yang, Yajiao Wang, Rujia Lin, Bichun Huang, Xia Sheng, Xinlei Wu, Zhiyun Cao","doi":"10.1002/pon.70010","DOIUrl":"https://doi.org/10.1002/pon.70010","url":null,"abstract":"<p><strong>Objective: </strong>Cancer patients generally have high stress levels, which often leads to depression, anxiety and other psychological problems. Laughter therapy has been used to relieve stress, depression and anxiety in cancer patients, but its efficacy is uncertain. The study aims to summarize evidence on the efficacy of laughter therapy on psychological symptoms of people with cancer.</p><p><strong>Methods: </strong>A search was conducted in 10 electronic databases for randomized controlled trials (RCTs) reported before May 2023. This systematic review was reported based on the PRISMA 2020 statement. The evaluation of methodological quality and risk of biases were conducted by the Cochrane Risk of Bias Assessment tool version 2, and evidence evaluation was conducted using the GRADE pro online assessment tool. Statistical analysis adopted the Review Manager version 5.4 software.</p><p><strong>Results: </strong>A total of eight studies were included involving 543 participants. Meta-analysis showed that laughter therapy plus routine nursing produced more positive effects than routine nursing in relieving stress (SMD = -1.18, 95% CI -1.73, -0.62, p < 0.0001), depression (SMD = -1.05, 95% CI -1.30, -0.81, p < 0.00001) and anxiety (SMD = -0.81, 95% CI -1.20, -0.43, p < 0.0001).</p><p><strong>Conclusions: </strong>Laughter therapy could effectively relieve stress, depression and anxiety of cancer patients. Future studies should improve the methodological quality of randomized controlled trials, conduct appropriate follow-up, and report details of follow-up. Additionally, it should perform multi-center and large-sample studies, and combine both subjective and objective outcome indications to enhance the persuasiveness of evidence supporting the effectiveness of laughter therapy.</p><p><strong>Trial registration: </strong>PROSPERO register: CRD 42023452739.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142547019","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":"The Supportive Care Needs of Individuals Living With Advanced or Metastatic Lung Cancer Receiving Targeted or Immunotherapies.","authors":"Emma Kearns, Alanna K Chu, Rinat Nissim, Paul Wheatley-Price, Tim Aubry, Sophie Lebel","doi":"10.1002/pon.70015","DOIUrl":"https://doi.org/10.1002/pon.70015","url":null,"abstract":"<p><strong>Objective: </strong>Lung cancer is associated with the highest incidence and mortality of all cancers. New treatments, called targeted therapies (TT) and immunotherapies (IO), offer higher treatment efficacy and fewer side effects compared to traditional treatments but are accompanied by uncertainty and an unpredictable treatment course. There is a paucity of research on the experiences of individuals living with advanced or metastatic lung cancer receiving TT/IO, and even less is known about the supportive care needs of this population.</p><p><strong>Methods: </strong>Twenty four participants from across Canada participated in semi-structured interviews regarding their supportive care needs. Thematic analysis was utilized to identify their supportive care needs.</p><p><strong>Results: </strong>Qualitative coding identified unmet needs and challenges. All participants indicated difficulties with unmet supportive care needs, including psychological, informational, and practical needs.</p><p><strong>Conclusions: </strong>The exploration of supportive care experiences of patients receiving TT/IO exposes high distress and unmet needs. Results indicate the need for timely and accessible supportive cancer care. Results can inform patient advocacy efforts and the development of new services.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142547020","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":"Development and Psychometric Testing of the Existential Distress Scale for Palliative Care Cancer Patients.","authors":"Ying Chen, Guojuan Chen, Jianwei Zheng, Huimin Xiao","doi":"10.1002/pon.70016","DOIUrl":"https://doi.org/10.1002/pon.70016","url":null,"abstract":"<p><strong>Objective: </strong>Existential distress is a common phenomenon in palliative care cancer patients. Developing a reliable and easy-to-use assessment scale for existential distress of palliative care cancer patients is crucial. The aim of this study was to develop a measurement of existential distress for palliative care cancer patients and test its properties.</p><p><strong>Methods: </strong>The guidelines for developing a scale proposed by DeVellis were followed. Palliative care cancer patients were invited to test the draft scale. Two-hundred and nineteen valid questionnaires were included for the item analysis and exploratory factor analysis. Three-hundred and two valid questionnaires were included for confirmatory factor, convergent validity, discriminant validity, and internal consistency reliability analyses. Twenty repeated data were measured for test-retest reliability analysis.</p><p><strong>Results: </strong>The Existential Distress Scale for Palliative Care Cancer Patients was developed with nine items and three dimensions, including meaninglessness, alienation, and death anxiety. The confirmatory factor analysis showed that the developed scale had a stable factor structure. The Cronbach's α for the whole scale was 0.81, and that for each dimension was 0.76, 0.67, and 0.70, respectively. The test-retest reliability of the scale was 0.79, and that of each dimension was 0.58-0.64.</p><p><strong>Conclusions: </strong>The Existential Distress Scale for Palliative Care Cancer Patients is a simple but reliable and valid tool.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142564841","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":"Clinical Characteristics and Care Trajectories of Transgender and Gender Diverse Patients With Cancer Seen in a Pediatric Gender Clinic.","authors":"Madeline H Bono, Hannah L Smith, Coleen R Williams, Kerry McGregor, Ariel K Berman, Elizabeth R Boskey","doi":"10.1002/pon.70017","DOIUrl":"https://doi.org/10.1002/pon.70017","url":null,"abstract":"<p><strong>Background: </strong>There is very little information on the experiences of transgender and gender diverse (TGD) youth with cancer.</p><p><strong>Aims: </strong>To examine clinical characteristics and care trajectories of TGD youth a history of cancer.</p><p><strong>Methods: </strong>This case series reviewed records of 2790 pediatric gender clinic patients seen between 2007 and 2022 to identify 14 with a history of cancer diagnosis. Demographics, clinical characteristics, disclosure of gender identity to oncology teams, oncology teams' use of correct names and pronouns, documented interprofessional communication between gender health and oncology teams, and course of medical gender affirmation were reviewed.</p><p><strong>Results: </strong>Of 14 TGD youth with a history of cancer, 11 (78.6%) were diagnosed prior to presenting to the gender clinic (mean [SD] = 8.2 [4.7] years), three following initial gender care (mean [SD] = 1.1 [0.2] years). Six (42.9%) patients were engaged in annual survivorship care when presenting, and 8 (57.1%) were seen concurrently by both clinics. Nine (64.3%) patients had documented communication between teams. Three-quarters of patients who were seen concurrently by both clinics had documented interprofessional communication. Eight (57.1%) patients received gender affirming hormones, after cancer treatment concluded.</p><p><strong>Conclusion: </strong>TGD youth with cancer experiences present for gender affirming care and merit clinical attention. There was variability in (1) patients' and families' disclosure of TGD identities to oncology teams, (2) whether oncology documentation consistently used patients' correct name and pronouns, and (3) whether there was documented interprofessional consultation between teams. There is need for ongoing improvement in research and clinical protocols for TGD youth with cancer.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142591346","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":"Effects of Mobile Application-Based Cognitive Behavioral Therapy on Psychological Outcomes in Women Treated for Breast Cancer: A Randomized Controlled Pilot Trial in Germany.","authors":"Ria Heinrich, Georgia Schilling, Ewa Wojtyna, Dirk Arnold, Mareike Geisler, Susanne Kley, Piotr Grudzinski, Małgorzata Księżak, Tonio Schoenfelder","doi":"10.1002/pon.70003","DOIUrl":"https://doi.org/10.1002/pon.70003","url":null,"abstract":"<p><strong>Objective: </strong>Breast cancer has a strong impact on the mental state of those affected. Cognitive behavioral therapy (CBT) is one effective approach to reduce disease burden. This randomized controlled pilot trial aimed to assess the effect of the digital CBT-based application Living Well on psychological outcomes in a German female breast cancer population.</p><p><strong>Methods: </strong>Female breast cancer patients (n = 70) with ongoing or finished oncological treatment that is who were receiving or had received any type of oncological treatment were included in the study and randomized to an intervention group (IG, n = 32) receiving Living Well in addition to care as usual, and a control group (CG, n = 38) receiving care as usual only. Participants completed standardized questionnaires at baseline and after 2, 4, 8, and 12 weeks to assess anxiety and depression (HADS) as primary outcomes, distress (DT), health-related quality of life (HRQoL, AQoL-8D), and illness perception (B-IPQ) as secondary outcomes.</p><p><strong>Results: </strong>After 12 weeks, significant (p < 0.05) higher improvements in the IG could be observed in anxiety levels, HRQoL, and illness perception, when compared to the CG. Age and time since diagnosis were found to be relevant covariates for anxiety levels. In distress levels, the IG showed a clinically relevant and nearly significant reduction compared to the CG (p = 0.057). No effects could be observed in depression levels.</p><p><strong>Conclusions: </strong>The results demonstrate the potential of Living Well to improve psychological outcomes of female breast cancer patients and encourage further studies evaluating the effectiveness of the digital application.</p><p><strong>Trial registration: </strong>The trial has been registered in the German Clinical Trials Register (DRKS00029918).</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506705","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":"Understanding the Intersection of Identity and Cancer Experience Among Racially, Ethnically, Gender and Sexual Minoritized Adolescents and Young Adults With Cancer.","authors":"Kaitlyn Hanson, Andrew Hatala, Mirha Zohair, Ian Scott, Vinesha Ramasamay, Kristin Wilson, Roxanne van Velzen, Zeba Tayabee, Fiona Schulte, Morgan Stirling, Deepak Louis, Lisa M Lix, Allan Garland, Alyson Mahar, Sapna Oberoi","doi":"10.1002/pon.70000","DOIUrl":"10.1002/pon.70000","url":null,"abstract":"<p><strong>Objectives: </strong>Adolescents and young adults (AYAs, 18-39 years) with cancer identifying as racially/ethnically minoritized or 2SLGBTQIA+ (Two-Spirit, lesbian, gay, bisexual, transgender, queer, intersex, asexual and \"+\" referring to other queer identities) have been underrepresented in cancer research. This study explores the aspects of identity that hold significance for these minoritized AYAs and how these facets impact their healthcare experiences.</p><p><strong>Methods: </strong>Eligible participants comprised English-speaking AYAs who self-identified as racially/ethnically minoritized and/or 2SLGBTQIA+, were diagnosed with cancer between the ages of 15-39, currently aged > 18, and had received or were receiving cancer care within Canadian healthcare system. Additionally, four patient partners meeting the same criteria were recruited as research collaborators. Semi-structured one-on-one virtual interviews guided by an interview script were conducted, and qualitative analysis employed a framework approach.</p><p><strong>Results: </strong>We recruited 23 participants from 4 Canadian provinces (mean age: 28, Range: 20-44); 17 identified as racially/ethnically minoritized, one as sexual/gender minoritized, and five as racially/ethnically and sexually/gender minoritized. Participants emphasized that their culture/ethnicity, religion/spirituality, sexuality, gender, family, career, and being an immigrant are important aspects of their identity, with only one participant recognizing their identity as a \"person with cancer\". A cancer diagnosis altered the aspects of identity deemed most significant by participants. Both visible and invisible aspects of identity shaped participants' experiences and influenced their level of trust in the healthcare system.</p><p><strong>Conclusion: </strong>Racially, ethnically, gender, or sexually minoritized AYAs with cancer place considerable importance on aspects of their identity that are shaped by their respective communities. Recognizing and respecting these identities are paramount for healthcare professionals to deliver safe and inclusive care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506709","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":"Walking the Talk: \"Reflexivity\" to Advance Integration of Patient Reported Outcomes for Cancer Care Screening.","authors":"Antoine Przybylak-Brouillard, Peter Nugus, Sylvie Lambert","doi":"10.1002/pon.9307","DOIUrl":"https://doi.org/10.1002/pon.9307","url":null,"abstract":"<p><p>In this commentary, we propose the use of video-reflexive ethnography (VRE) as a means to support integration of patient-reported outcomes (PROs) in cancer care screening. As for any policy or intervention, the optimization of PROs depends on moving beyond their mere formal introduction, and depends on the integration of PROs in the everyday practice contexts of health care professionals (HPEs). The use of VRE allows for video-playback sessions among oncology professionals to support team-based learning and practice-change grounded in \"reflexivity.\" Through a review of previous methods used to support organizational change in healthcare settings (e.g., policies, quality improvement initiatives, simulation sessions), we present some unsung advantages of VRE that can be applied to a complex integrated setting, such as cancer care. As opposed to other methods to create change, VRE does not dictate new measures, but rather supports \"bottom-up\" provider-initiated changes to health care practices and contexts, grounded in collaborative day-to-day practice. We argue that VRE optimizes PROs in cancer care by facilitating their effective and sustainable integration, to promote improved patient care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142361943","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":"Validity and Reliability of a Simplified Chinese Version of Cancer Survivors' Unmet Needs Scale (CaSUN).","authors":"Xiaojingyuan Xu, Xiaoyun Liang, Shiquan Yin","doi":"10.1002/pon.70008","DOIUrl":"https://doi.org/10.1002/pon.70008","url":null,"abstract":"<p><strong>Objective: </strong>To translate Cancer Survivors' Unmet Needs scale (CaSUN) into Simplified Chinese, and to assess the validity and reliability of this translated version among Chinese cancer survivors.</p><p><strong>Methods: </strong>Following the cross-cultural adaptation guidelines, the original CaSUN scale was translated from English into Simplified Chinese. To enhance the readability and comprehension of each item, a pilot study involving 40 cancer patients was carried out. Subsequently, 324 cancer survivors participating in follow-up appointments at a cancer hospital in Beijing, China completed the Simplified Chinese version of the CaSUN. The scale's validity was assessed through factor analysis. Indices including Satorra-Bentler scaled chi-square to degree of freedom ratio (χ²/df), comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean squared residual (SRMR) were employed for construct validity. Average variance extracted (AVE) of each category reflected the convergent validity. Reliability was confirmed with both Cronbach's α and Guttman split-half coefficient.</p><p><strong>Results: </strong>Factor analysis suggested that a three-level hierarchical structure of the CaSUN with four first-order factors, nine second-order factors and all the 35 items assessing unmet need could fit our data well (χ²/df = 2.833, CFI = 0.902, RMSEA = 0.076, SRMR = 0.066), indicating sufficient construct validity for this model. For convergent validity, AVE of each second-order category were greater than 0.5. Regarding reliability, Cronbach's α of the 35 items was 0.968, and the Guttman split-half coefficient was 0.984. Both of these coefficients were higher than 0.8.</p><p><strong>Conclusions: </strong>The present Simplified Chinese version of CaSUN had good cultural adaptability, appropriate validity and reliability for assessing unmet needs in different cancer survivor groups in Chinese mainland. This Simplified Chinese version of CaSUN can assist health professionals in addressing individual survivor needs and bridge the gap between patients' experiences and their expectations, thereby improving the quality of cancer survivorship care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506711","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":"A Preliminary Phenomenological Exploration of Experiences of the Empty Pelvis Syndrome Derived From a Modified-Delphi: The Price of Survival Following Pelvic Exenteration for Advanced Pelvic Cancer.","authors":"Charles T West, Andreas Denys, Sam A Rose, Eva Pape, Gabrielle H van Ramshorst, Paul A Sutton, Hideaki Yano, Malcolm A West, Alex H Mirnezami, Lynn Calman, Samantha C Sodergren","doi":"10.1002/pon.9316","DOIUrl":"https://doi.org/10.1002/pon.9316","url":null,"abstract":"<p><strong>Objective: </strong>The empty pelvis syndrome (EPS) is common after pelvic exenteration (PE), causing fluid collections, bowel obstruction, perineal sinuses, and fistulas. The best approach to fill the pelvis to mitigate this remains controversial, and the impact of EPS on health-related quality of life (HrQoL) is unknown. This study is the first to begin to explore lived-experiences of EPS complications.</p><p><strong>Methods: </strong>Unstructured EPS virtual focus group meetings were conducted with a convenience sample of patients who underwent PE, as an extension of a modified-Delphi study. Interpretative phenomenological analysis was conducted on verbatim transcripts to generate group experiential themes.</p><p><strong>Results: </strong>Twelve patients (eight UK, one Dutch, and three Belgian) participated in four focus groups. Eight EPS complications were reported, (two pelvic collections, five chronic perineal sinuses, and one bowel obstruction). Group experiential themes were 'Out of Options', depicting patients forced to accept complications or limited survival; 'The New Normal', with EPS potentially delaying adaptation to post-PE HrQoL; 'Information Influencing Adaptation,' emphasising the significance of patients understanding EPS to cope with its effects; and 'Symptoms,' reporting manifestations of EPS, the resultant physical limitations, and an intangible feeling that patients lost part of themselves.</p><p><strong>Conclusions: </strong>EPS may influence patient decision-making, regret, adaptation, and information-seeking. It can cause a variety of unpleasant symptoms and physical limitations, which may include phantom phenomenon. This work supports ongoing purposeful HrQoL research to better define these themes.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142352680","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}