Pub Date : 2023-10-01DOI: 10.1097/or9.0000000000000113
Cecilia Vindrola-Padros, Lorna A. Fern, Craig Gerrand, Nicholas J. Hulbert-Williams, Maria Lawal, Lesley Storey, Mary Wells, Rachael Windsor, Julie Woodford, Rachel M. Taylor
Abstract Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice.
背景:癌症复发恐惧(Fear of cancer recurrence, FCR)常被描述为癌症最痛苦的后果，并对生活质量产生负面影响。关于肉瘤患者FCR的研究很少。我们试图探索患者在肉瘤诊断后的FCR，以确定这些恐惧何时出现以及患者用于解决这些恐惧的策略。方法:这是对来自肉瘤患者的定性半结构化访谈数据的二次分析，作为开发患者报告的结果测量研究的一部分。这项研究包括来自英国各地的121名年龄在13-82岁之间的患者。基于生活质量(身体、情感和社会福利)的领域，电话和面对面访谈主要关注肉瘤诊断后的生活经历。使用常识模型进行二次分析。结果:确定了以下四个关键主题:FCR的触发因素(症状和事件)，FCR的讨论，FCR的后果(对生活质量的负面影响)以及用于处理FCR的策略。结论:肉瘤患者在治疗的不同阶段报告了FCR，以及这些恐惧如何在他们的日常生活中发挥作用。尽管有这些经验，但FCR的识别和管理尚未被报道为常规临床实践的核心组成部分。
{"title":"Experiences of fear of recurrence in patients with sarcoma","authors":"Cecilia Vindrola-Padros, Lorna A. Fern, Craig Gerrand, Nicholas J. Hulbert-Williams, Maria Lawal, Lesley Storey, Mary Wells, Rachael Windsor, Julie Woodford, Rachel M. Taylor","doi":"10.1097/or9.0000000000000113","DOIUrl":"https://doi.org/10.1097/or9.0000000000000113","url":null,"abstract":"Abstract Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135654317","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/or9.0000000000000117
Edouard Nicaise, Benjamin N. Schmeusser, Henry Biermann, Adil Ali, Sriram Ambadi, Dattatraya H. Patil, Manuel Armas-Phan, Khushali Vashi, Arnold R. Palacios, Eric Midenberg, Benjamin Petrinec, Bassel Nazha, Mehmet A. Bilen, Kenneth Ogan, Viraj A. Master
Abstract Introduction and Objective: Patients with kidney cancer experience higher rates of depression compared with other cancer subtypes. Inflammation has been shown to contribute to depression associated with malignancy. Here, we assess the association between preoperative C-reactive protein (CRP) and major depression, as screened by the eight-item Patient Health Questionnaire (PHQ-8) depression scale, in patients undergoing nephrectomy for nonmetastatic renal cell carcinoma (RCC). Methods: Retrospective review of prospectively administered PHQ-8 surveys in patients who underwent nephrectomy for nonmetastatic RCC was conducted. Patients with available PHQ-8 within 180 days before and after surgery were included. The association of major depressive symptoms on preoperative PHQ-8 and clinical improvement on postoperative survey with patient/tumor characteristics and CRP levels was determined by the generalized chi-square test for categorical variables and analysis of variance for continuous variables. Multivariable logistic regression was used to analyze variables associated with major depression on PHQ-8 and postoperative survey improvement. Results: Two hundred forty-five patients were analyzed. Most were male (66%). Median age and body mass index were 65 and 28.9 kg/m 2 , respectively. 64.5% of patients were White, and 29.0% were Black. 30.2% had an elevated CRP (≥10 mg/L). 45 (18.4%) patients screened positive for major depressive symptoms on PHQ-8 (≥10 points). Patients with elevated CRP were more likely to have positive preoperative depression screening (odds ratio [OR] 2.66, 95% CI 1.08–6.52, P = .033) but had higher probability of demonstrating meaningful change on PHQ-8 after nephrectomy (OR 3.50, 95% CI 1.04–11.85, P = .044). Conclusion: In nonmetastatic RCC, patients with elevated preoperative CRP had higher scoring for major depressive symptoms on PHQ-8 and were more likely to demonstrate clinical improvement in depressive symptomatology after nephrectomy.
摘要简介与目的:肾癌患者抑郁发生率高于其他癌症亚型。炎症已被证明有助于与恶性肿瘤相关的抑郁。在这里，我们评估术前c反应蛋白(CRP)和重度抑郁之间的关系，通过8项患者健康问卷(PHQ-8)抑郁量表筛选，在接受非转移性肾细胞癌(RCC)手术的患者中。方法:对接受非转移性肾细胞癌肾切除术的患者进行前瞻性PHQ-8调查进行回顾性分析。纳入术前和术后180天内PHQ-8可用的患者。通过分类变量的广义卡方检验和连续变量的方差分析来确定患者/肿瘤特征和CRP水平与术前PHQ-8的重度抑郁症状和术后调查的临床改善之间的关系。采用多变量logistic回归分析与PHQ-8重度抑郁及术后调查改善相关的变量。结果:共分析245例患者。大多数是男性(66%)。年龄和体重指数中位数分别为65和28.9 kg/ m2。64.5%的患者为白人，29.0%为黑人，30.2%的患者CRP升高(≥10 mg/L)。45例(18.4%)患者PHQ-8量表阳性(≥10分)。CRP升高的患者术前抑郁筛查阳性的可能性更大(比值比[OR] 2.66, 95% CI 1.08-6.52, P = 0.033)，但在肾切除术后PHQ-8有意义变化的可能性更大(比值比[OR] 3.50, 95% CI 1.04-11.85, P = 0.044)。结论:在非转移性肾癌中，术前CRP升高的患者在PHQ-8中有较高的重度抑郁症状评分，并且更有可能在肾切除术后表现出抑郁症状的临床改善。
{"title":"The association of C-reactive protein with major depressive symptoms in nonmetastatic renal cell carcinoma","authors":"Edouard Nicaise, Benjamin N. Schmeusser, Henry Biermann, Adil Ali, Sriram Ambadi, Dattatraya H. Patil, Manuel Armas-Phan, Khushali Vashi, Arnold R. Palacios, Eric Midenberg, Benjamin Petrinec, Bassel Nazha, Mehmet A. Bilen, Kenneth Ogan, Viraj A. Master","doi":"10.1097/or9.0000000000000117","DOIUrl":"https://doi.org/10.1097/or9.0000000000000117","url":null,"abstract":"Abstract Introduction and Objective: Patients with kidney cancer experience higher rates of depression compared with other cancer subtypes. Inflammation has been shown to contribute to depression associated with malignancy. Here, we assess the association between preoperative C-reactive protein (CRP) and major depression, as screened by the eight-item Patient Health Questionnaire (PHQ-8) depression scale, in patients undergoing nephrectomy for nonmetastatic renal cell carcinoma (RCC). Methods: Retrospective review of prospectively administered PHQ-8 surveys in patients who underwent nephrectomy for nonmetastatic RCC was conducted. Patients with available PHQ-8 within 180 days before and after surgery were included. The association of major depressive symptoms on preoperative PHQ-8 and clinical improvement on postoperative survey with patient/tumor characteristics and CRP levels was determined by the generalized chi-square test for categorical variables and analysis of variance for continuous variables. Multivariable logistic regression was used to analyze variables associated with major depression on PHQ-8 and postoperative survey improvement. Results: Two hundred forty-five patients were analyzed. Most were male (66%). Median age and body mass index were 65 and 28.9 kg/m 2 , respectively. 64.5% of patients were White, and 29.0% were Black. 30.2% had an elevated CRP (≥10 mg/L). 45 (18.4%) patients screened positive for major depressive symptoms on PHQ-8 (≥10 points). Patients with elevated CRP were more likely to have positive preoperative depression screening (odds ratio [OR] 2.66, 95% CI 1.08–6.52, P = .033) but had higher probability of demonstrating meaningful change on PHQ-8 after nephrectomy (OR 3.50, 95% CI 1.04–11.85, P = .044). Conclusion: In nonmetastatic RCC, patients with elevated preoperative CRP had higher scoring for major depressive symptoms on PHQ-8 and were more likely to demonstrate clinical improvement in depressive symptomatology after nephrectomy.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136198948","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/OR9.0000000000000121
Sharon Manne, Shannon Virtue, Deborah Kashy, Sara Frederick, Heather Jim, A. Leiser, Christina Studts
Abstract Background: Women diagnosed with gynecological cancer suffer from disease-related and treatment-related symptoms that can result in diminished quality of life and persistent distress. There are few evidence-based treatments to mitigate distress for these survivors. Objective: The aim of this study was to evaluate the feasibility, acceptability, and preliminary effects of Journey Ahead, a blended online and telehealth coaching intervention adapted from the in-person Coping and Communication Intervention. Methods: Fourteen women diagnosed and treated for gynecological cancer completed a baseline survey and were enrolled in Journey Ahead, which consisted of eight online modules and five telehealth coaching calls, and then completed a follow-up survey and treatment evaluation. Results: Acceptance rates (27.5%) and follow-up survey completion (57.1%) were lower than expected. Eighty-six percent of participants logged into the online program, and 64.2% completed it. Eighty-three percent of participants completed four or five of the telehealth sessions, and 35.7% attended one session or did not attend any of the telehealth sessions. The results indicated that this intervention reduced depressive symptoms and cancer-related distress and increased emotional well-being, emotional expression, acceptance, psychological flexibility, and coping efficacy. Conclusions: The results highlight the challenges of recruiting during the COVID-19 pandemic and the importance of collecting detailed information from study participants about how to engage them in fully remote interventions. Overall, this single-arm pilot and feasibility study demonstrated satisfactory feasibility, excellent acceptability, and a promising preliminary impact on psychological outcomes.
{"title":"An online and telehealth intervention for women diagnosed with gynecological cancer during the COVID-19 pandemic: The Journey Ahead pilot and feasibility trial","authors":"Sharon Manne, Shannon Virtue, Deborah Kashy, Sara Frederick, Heather Jim, A. Leiser, Christina Studts","doi":"10.1097/OR9.0000000000000121","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000121","url":null,"abstract":"Abstract Background: Women diagnosed with gynecological cancer suffer from disease-related and treatment-related symptoms that can result in diminished quality of life and persistent distress. There are few evidence-based treatments to mitigate distress for these survivors. Objective: The aim of this study was to evaluate the feasibility, acceptability, and preliminary effects of Journey Ahead, a blended online and telehealth coaching intervention adapted from the in-person Coping and Communication Intervention. Methods: Fourteen women diagnosed and treated for gynecological cancer completed a baseline survey and were enrolled in Journey Ahead, which consisted of eight online modules and five telehealth coaching calls, and then completed a follow-up survey and treatment evaluation. Results: Acceptance rates (27.5%) and follow-up survey completion (57.1%) were lower than expected. Eighty-six percent of participants logged into the online program, and 64.2% completed it. Eighty-three percent of participants completed four or five of the telehealth sessions, and 35.7% attended one session or did not attend any of the telehealth sessions. The results indicated that this intervention reduced depressive symptoms and cancer-related distress and increased emotional well-being, emotional expression, acceptance, psychological flexibility, and coping efficacy. Conclusions: The results highlight the challenges of recruiting during the COVID-19 pandemic and the importance of collecting detailed information from study participants about how to engage them in fully remote interventions. Overall, this single-arm pilot and feasibility study demonstrated satisfactory feasibility, excellent acceptability, and a promising preliminary impact on psychological outcomes.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139330893","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/or9.0000000000000115
Andre G. Bateman, Emily M. Greeson, Kathleen Lowenstein, Michael G. Rodriguez, James A. Lyons, Matthew A. Stack, Michael O'Rourke
Abstract Background: Rural populations exhibit low colorectal cancer (CRC) screening rates, which may be a consequence of social determinants of health but may also result from individual health beliefs. This study aimed to explore the association between key health belief model (HBM) variables and CRC screening status in a rural Midwest population. Methods: One hundred thirty six people participated in this cross-sectional study. A survey instrument was developed to capture demographic information and measure the following HBM variables: perceived barriers, perceived benefits, self-efficacy beliefs associated with CRC screening, and knowledge associated with CRC. Results: The response rate for the study was 17.6%. The most endorsed (28.5%) barrier to CRC screening was fear of something going wrong. The most endorsed (86.5%) benefit of CRC screening was confidence that privacy and confidentiality would be protected. There were significant differences ( P < .01) in means for perception of barriers, benefits, and self-efficacy according to CRC screening status. In a model which included perception of barriers, benefits, and self-efficacy, only perceived barriers made a unique, significant ( P < .05) contribution (OR = 0.823 [0.706–0.958]) in predicting CRC screening status. Conclusions: Key HBM variables, perception of barriers, benefits, and self-efficacy seem to be important factors associated with CRC screening in rural populations and may be appropriate targets for interventions to increase CRC screening.
{"title":"Colorectal cancer screening status and its association with health belief model variables in a rural population","authors":"Andre G. Bateman, Emily M. Greeson, Kathleen Lowenstein, Michael G. Rodriguez, James A. Lyons, Matthew A. Stack, Michael O'Rourke","doi":"10.1097/or9.0000000000000115","DOIUrl":"https://doi.org/10.1097/or9.0000000000000115","url":null,"abstract":"Abstract Background: Rural populations exhibit low colorectal cancer (CRC) screening rates, which may be a consequence of social determinants of health but may also result from individual health beliefs. This study aimed to explore the association between key health belief model (HBM) variables and CRC screening status in a rural Midwest population. Methods: One hundred thirty six people participated in this cross-sectional study. A survey instrument was developed to capture demographic information and measure the following HBM variables: perceived barriers, perceived benefits, self-efficacy beliefs associated with CRC screening, and knowledge associated with CRC. Results: The response rate for the study was 17.6%. The most endorsed (28.5%) barrier to CRC screening was fear of something going wrong. The most endorsed (86.5%) benefit of CRC screening was confidence that privacy and confidentiality would be protected. There were significant differences ( P < .01) in means for perception of barriers, benefits, and self-efficacy according to CRC screening status. In a model which included perception of barriers, benefits, and self-efficacy, only perceived barriers made a unique, significant ( P < .05) contribution (OR = 0.823 [0.706–0.958]) in predicting CRC screening status. Conclusions: Key HBM variables, perception of barriers, benefits, and self-efficacy seem to be important factors associated with CRC screening in rural populations and may be appropriate targets for interventions to increase CRC screening.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136055217","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/OR9.0000000000000120
Kendra L. Rieger, Thomas F. Hack, Miriam A. Duff, H. Campbell-Enns, Christina H. West
Supplemental Digital Content is Available in the Text. Abstract Background: Given the distress associated with cancer experiences, there is a growing interest in mindfulness-based expressive arts interventions (MBAIs) for promoting patients' well-being. Our research objective was to develop a theoretical understanding of how patients with cancer experience, use, and draw meaning from an MBAI. Methods: We used a constructivist grounded theory research design and gathered narrative descriptions of participants' (N = 32) MBAI experiences through semistructured interviews and field notes. Participants brought the artwork they had created in the group, facilitating art elicitation. Data were analyzed with grounded theory methods. Results: Participants described how the dynamic interplay of mindfulness, the arts, group sharing, and bearing witness facilitated the processing and sharing of hidden thoughts, experiences, and emotions. The group facilitated several unique meaning-making processes, including re-envisioning personal identity within disruption and loss, creating a fitting container for the exploration of diverse emotions, revisiting difficult experiences within the sensitivity of art, and visualizing hope and healing. This process resulted in important learnings and benefits for living in the here and now: relational connections, facing cancer through artistic play, discovering intuition and personal resources, learning an emotional language and a new mindset to move forward, understanding what one needs to heal, and fostering gratitude and hope. Conclusions: MBAIs allowed for a multimodal form of meaning making which facilitated coping, adjustment, and living well with cancer. These findings will enable practitioners to design and implement more effective health services and inform future research about this therapeutically promising approach to psychosocial oncology care.
{"title":"A grounded theory of how people process their cancer experiences through a mindfulness-based expressive arts group","authors":"Kendra L. Rieger, Thomas F. Hack, Miriam A. Duff, H. Campbell-Enns, Christina H. West","doi":"10.1097/OR9.0000000000000120","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000120","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: Given the distress associated with cancer experiences, there is a growing interest in mindfulness-based expressive arts interventions (MBAIs) for promoting patients' well-being. Our research objective was to develop a theoretical understanding of how patients with cancer experience, use, and draw meaning from an MBAI. Methods: We used a constructivist grounded theory research design and gathered narrative descriptions of participants' (N = 32) MBAI experiences through semistructured interviews and field notes. Participants brought the artwork they had created in the group, facilitating art elicitation. Data were analyzed with grounded theory methods. Results: Participants described how the dynamic interplay of mindfulness, the arts, group sharing, and bearing witness facilitated the processing and sharing of hidden thoughts, experiences, and emotions. The group facilitated several unique meaning-making processes, including re-envisioning personal identity within disruption and loss, creating a fitting container for the exploration of diverse emotions, revisiting difficult experiences within the sensitivity of art, and visualizing hope and healing. This process resulted in important learnings and benefits for living in the here and now: relational connections, facing cancer through artistic play, discovering intuition and personal resources, learning an emotional language and a new mindset to move forward, understanding what one needs to heal, and fostering gratitude and hope. Conclusions: MBAIs allowed for a multimodal form of meaning making which facilitated coping, adjustment, and living well with cancer. These findings will enable practitioners to design and implement more effective health services and inform future research about this therapeutically promising approach to psychosocial oncology care.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139325359","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/or9.0000000000000112
Megan S. Henkelman, Kirsti I. Toivonen, Jason Tay, Sara Beattie, Lauren M. Walker
Abstract Background: Cancer has been increasingly recognized as having lasting effects on sexuality. Sexual function in breast and reproductive cancer survivors is better characterized, but the experiences of hematological cancer survivors remain understudied. Only one previous study acknowledges the existence of sexuality concerns among multiple myeloma (MM) survivors. This study explored MM patients' experiences of sexual expression and examined patient-provider communication about sexuality. Methods: Participants with MM ( N = 65) were recruited internationally for an online survey about sexual experiences. Open-ended questions queried MM disease–specific experiences that may affect engagement in sexual activity, methods used to adapt to sexual changes, and communication with health care providers. Responses were analyzed using thematic content analysis. Results: Participants identified several barriers to sexual activity associated with MM, including concerns about bone health, infections, and vaginal bleeding and bruising. They also described adapting to sexual challenges by trying sexual medicines/aids, changing their mode of sexual expression, and managing treatment risks related to sexuality. Half of the participants reported sexuality discussions with providers, with a minority receiving sexual health-related recommendations. Conclusions: To date, the results of sexuality studies focus largely on hematological cancers as a group, without exploring specific disease experiences. Participants reported sexual difficulties common to other cancers but also some which may be unique to MM. Sexuality concerns were underaddressed by health care providers. Given that some sexuality concerns are related specifically to disease risk, discussions with oncology providers are of particular importance; therefore, specific suggestions for improving patient-provider communication and care are offered.
{"title":"Patient-reported disease-specific concerns relating to sexuality in multiple myeloma","authors":"Megan S. Henkelman, Kirsti I. Toivonen, Jason Tay, Sara Beattie, Lauren M. Walker","doi":"10.1097/or9.0000000000000112","DOIUrl":"https://doi.org/10.1097/or9.0000000000000112","url":null,"abstract":"Abstract Background: Cancer has been increasingly recognized as having lasting effects on sexuality. Sexual function in breast and reproductive cancer survivors is better characterized, but the experiences of hematological cancer survivors remain understudied. Only one previous study acknowledges the existence of sexuality concerns among multiple myeloma (MM) survivors. This study explored MM patients' experiences of sexual expression and examined patient-provider communication about sexuality. Methods: Participants with MM ( N = 65) were recruited internationally for an online survey about sexual experiences. Open-ended questions queried MM disease–specific experiences that may affect engagement in sexual activity, methods used to adapt to sexual changes, and communication with health care providers. Responses were analyzed using thematic content analysis. Results: Participants identified several barriers to sexual activity associated with MM, including concerns about bone health, infections, and vaginal bleeding and bruising. They also described adapting to sexual challenges by trying sexual medicines/aids, changing their mode of sexual expression, and managing treatment risks related to sexuality. Half of the participants reported sexuality discussions with providers, with a minority receiving sexual health-related recommendations. Conclusions: To date, the results of sexuality studies focus largely on hematological cancers as a group, without exploring specific disease experiences. Participants reported sexual difficulties common to other cancers but also some which may be unique to MM. Sexuality concerns were underaddressed by health care providers. Given that some sexuality concerns are related specifically to disease risk, discussions with oncology providers are of particular importance; therefore, specific suggestions for improving patient-provider communication and care are offered.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135654315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Background: Immigrant women living with breast cancer experience a lack of psychosocial and emotional support, which adds to the complexity of navigating and using health care services in Canada. Aim: To explore the mediators of psychosocial well-being for immigrant women living with breast cancer in Canada. Methods: A critical ethnography was used. The study identified 27 immigrants living with breast cancer, who had been born in a foreign country, migrated to Canada within the past 10 years, and lived in rural communities of British Columbia between August 2021 and March 2022. Institutional research ethics board approval and informed consent were obtained. Results: The findings indicated two significant themes: The immigrant women had limited knowledge, information, and communication and experienced physical, psychological, and emotional distress. Conclusion: There is a significant need for culturally responsive care services for immigrant women living with breast cancer in rural communities. Recommendations include the development of psychosocial oncology, such as integrated counseling and therapies, to reduce cancer-related post-traumatic stress and improve their psychosocial and emotional well-being. Interdisciplinary approaches to psychosocial oncology are particularly crucial for immigrants and rural communities, where women need access to cancer navigation and ongoing support for a better health-related quality of life.
{"title":"Mediators of psychosocial well-being for immigrant women living with breast cancer in Canada: a critical ethnography","authors":"Melba Sheila D'Souza, Florriann Carissa Fehr, Michelle Lynne Smith, Marie-Claire Marshall","doi":"10.1097/or9.0000000000000119","DOIUrl":"https://doi.org/10.1097/or9.0000000000000119","url":null,"abstract":"Abstract Background: Immigrant women living with breast cancer experience a lack of psychosocial and emotional support, which adds to the complexity of navigating and using health care services in Canada. Aim: To explore the mediators of psychosocial well-being for immigrant women living with breast cancer in Canada. Methods: A critical ethnography was used. The study identified 27 immigrants living with breast cancer, who had been born in a foreign country, migrated to Canada within the past 10 years, and lived in rural communities of British Columbia between August 2021 and March 2022. Institutional research ethics board approval and informed consent were obtained. Results: The findings indicated two significant themes: The immigrant women had limited knowledge, information, and communication and experienced physical, psychological, and emotional distress. Conclusion: There is a significant need for culturally responsive care services for immigrant women living with breast cancer in rural communities. Recommendations include the development of psychosocial oncology, such as integrated counseling and therapies, to reduce cancer-related post-traumatic stress and improve their psychosocial and emotional well-being. Interdisciplinary approaches to psychosocial oncology are particularly crucial for immigrants and rural communities, where women need access to cancer navigation and ongoing support for a better health-related quality of life.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136198947","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-01DOI: 10.1097/or9.0000000000000114
Essie Torres, Alice Richman, Judy B. Koutlas, Phyllis A. DeAntonio, Darla K. Liles, Katherine Romero-Trejo, Molly Robinson Tripp
Abstract Background: Adherence is increasingly understood as a complex concept and is affected by many factors. Among rural patients with cancer, adherence behavior can be affected by increased psychosocial and physical distress as well as economic burden. This study explored facilitators and barriers to medication adherence to oral chemotherapeutic agents (OCAs) from the perspective of both rural patients with cancer and their cancer care providers. Methods: This study was conducted in a regional Cancer Center in North Carolina. Data for the cancer care providers (N = 10) were collected (January-February 2016), and data for the patients with cancer (N = 25) were collected (March-June 2016). Qualitative interviews were conducted with patients with cancer currently taking OCAs, and interviews/focus groups were conducted with cancer care providers. Data analysis was conducted using the immersion crystallization approach. Results: The results of this qualitative study provide valuable insights into the attitudes of both cancer care providers and patients with cancer and their perceptions of adherence barriers and facilitators. The main barriers to adherence were costs associated with treatment, side effect management, comorbidities and concomitant treatments, limited health literacy, lack of social support, and patient-provider communication. Facilitators to adherence include education and follow-up, social support networks, and adherence strategies. Conclusion: Better communication, education/information, and social support were identified as facilitators of adherence in this study. It is critical to develop tailored strategies such as self-management behaviors, adherence strategies, and effective communication that can improve medication adherence and empower patients and their caregivers in their treatment management.
{"title":"Medication adherence to oral chemotherapeutic agents: a qualitative study of patients' and cancer care professionals' perspectives","authors":"Essie Torres, Alice Richman, Judy B. Koutlas, Phyllis A. DeAntonio, Darla K. Liles, Katherine Romero-Trejo, Molly Robinson Tripp","doi":"10.1097/or9.0000000000000114","DOIUrl":"https://doi.org/10.1097/or9.0000000000000114","url":null,"abstract":"Abstract Background: Adherence is increasingly understood as a complex concept and is affected by many factors. Among rural patients with cancer, adherence behavior can be affected by increased psychosocial and physical distress as well as economic burden. This study explored facilitators and barriers to medication adherence to oral chemotherapeutic agents (OCAs) from the perspective of both rural patients with cancer and their cancer care providers. Methods: This study was conducted in a regional Cancer Center in North Carolina. Data for the cancer care providers (N = 10) were collected (January-February 2016), and data for the patients with cancer (N = 25) were collected (March-June 2016). Qualitative interviews were conducted with patients with cancer currently taking OCAs, and interviews/focus groups were conducted with cancer care providers. Data analysis was conducted using the immersion crystallization approach. Results: The results of this qualitative study provide valuable insights into the attitudes of both cancer care providers and patients with cancer and their perceptions of adherence barriers and facilitators. The main barriers to adherence were costs associated with treatment, side effect management, comorbidities and concomitant treatments, limited health literacy, lack of social support, and patient-provider communication. Facilitators to adherence include education and follow-up, social support networks, and adherence strategies. Conclusion: Better communication, education/information, and social support were identified as facilitators of adherence in this study. It is critical to develop tailored strategies such as self-management behaviors, adherence strategies, and effective communication that can improve medication adherence and empower patients and their caregivers in their treatment management.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135656876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-07-01DOI: 10.1097/OR9.0000000000000109
T. Kakhniashvili, N. Okribelashvili, I. Kiladze, R. Fielding
Abstract Background: Depression commonly occurs in patients with breast cancer (BC), significantly affecting their quality of life. We screened Georgian women diagnosed with BC for depressive symptoms to determine their prevalence and examine associations with various sociodemographic and clinical characteristics. This is the first study focusing on mental well-being in patients with cancer in Georgia. Methods: In a multicenter observational study, 177 women receiving BC treatment were examined at three tertiary oncology hospitals in Georgia. Patient Health Questionnaire 9 (PHQ-9) was used for the identification of depressive symptoms. Patients were stratified using basic information on age, marital status, educational level, social and financial support, employment status, and clinical characteristics. Results: The average age was 52.9 years (34–77); 117 (66%) were married; 79 (45%) were working, but only 30 (17%) reported having adequate financial status; 128 (72%) had stage I-III disease; and 64 (36%) reported some degree of pain. Using pro-rated PHQ-9 scores, 46 patients (44%; 95% CI, 37–51) reported some level of depressive symptoms while 25 women (14%; 95% CI, 9–19) met the criteria for probable depressive disorder. A higher proportion of patients reporting pain also reported depressive symptoms (37/66, 56%) compared with those reporting no pain (41/111, 34%) (P = .013); women with stage IV disease were more likely to report depressive symptoms (26/44, 57%) compared with those with stages I-III (53/133, 40%) (P = .049); and single/previously married women (42/60, 70%) were more likely to report depressive symptoms than married women (51/117, 44%) (P = .001). Depressive symptom reporting did not differ by age or reported support. Conclusion: One in six of this sample of Georgian patients with BC had depressive symptom levels consistent with a depressive disorder. Depressive symptoms covaried by marital status, staging, and reported pain. These results can inform practitioner oncologists in Georgia of the needs for psychological support for patients with cancer and assist in building such support services.
{"title":"Prevalence of depression in women diagnosed with breast cancer in Georgia","authors":"T. Kakhniashvili, N. Okribelashvili, I. Kiladze, R. Fielding","doi":"10.1097/OR9.0000000000000109","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000109","url":null,"abstract":"Abstract Background: Depression commonly occurs in patients with breast cancer (BC), significantly affecting their quality of life. We screened Georgian women diagnosed with BC for depressive symptoms to determine their prevalence and examine associations with various sociodemographic and clinical characteristics. This is the first study focusing on mental well-being in patients with cancer in Georgia. Methods: In a multicenter observational study, 177 women receiving BC treatment were examined at three tertiary oncology hospitals in Georgia. Patient Health Questionnaire 9 (PHQ-9) was used for the identification of depressive symptoms. Patients were stratified using basic information on age, marital status, educational level, social and financial support, employment status, and clinical characteristics. Results: The average age was 52.9 years (34–77); 117 (66%) were married; 79 (45%) were working, but only 30 (17%) reported having adequate financial status; 128 (72%) had stage I-III disease; and 64 (36%) reported some degree of pain. Using pro-rated PHQ-9 scores, 46 patients (44%; 95% CI, 37–51) reported some level of depressive symptoms while 25 women (14%; 95% CI, 9–19) met the criteria for probable depressive disorder. A higher proportion of patients reporting pain also reported depressive symptoms (37/66, 56%) compared with those reporting no pain (41/111, 34%) (P = .013); women with stage IV disease were more likely to report depressive symptoms (26/44, 57%) compared with those with stages I-III (53/133, 40%) (P = .049); and single/previously married women (42/60, 70%) were more likely to report depressive symptoms than married women (51/117, 44%) (P = .001). Depressive symptom reporting did not differ by age or reported support. Conclusion: One in six of this sample of Georgian patients with BC had depressive symptom levels consistent with a depressive disorder. Depressive symptoms covaried by marital status, staging, and reported pain. These results can inform practitioner oncologists in Georgia of the needs for psychological support for patients with cancer and assist in building such support services.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46809417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-07-01DOI: 10.1097/OR9.0000000000000106
Juliet L. Kroll, Morgan Jones, Aileen B Chen, C. Yang, C. Carmack, L. Cohen, K. Milbury
Abstract Background: Adult attachment insecurity is associated with poor psychosocial and cancer-related symptom outcomes in patients with cancer; however, there is a paucity of research around the role of the spousal caregivers' attachment in patient quality of life (QOL) at the end of life (EOL). Attachment styles may be particularly relevant for couples coping with prolonged metastatic disease, where the threat of death or disease progression is highly salient. Methods: We conducted secondary analyses on a sample of patients with stage IV non–small cell lung cancer and their spouses. Participants separately completed questionnaires of attachment style (ECR-S), relationship closeness (PAIR), illness-related communication (holding back one's fear of death or disease progression), and cancer-related distress (IES). Patients additionally completed questionnaires on sense of life completion and QOL at EOL (QUAL-E Completion Subscale and Overall QOL Item) and symptom burden (MDASI-LC). Results: For patients, greater attachment avoidance was associated with lower sense of life completion (r = −0.31, P = .009) and lower overall QOL (r = −0.35, P = .003). Greater patient attachment anxiety was also associated with a lower sense of life completion (r = −0.26, P = .034). Greater caregiver attachment avoidance and attachment anxiety were associated with patient reports of lower overall QOL (r = −0.38, P = .001, r = −0.36, P = .002, respectively). In addition, greater caregiver attachment anxiety was associated with greater patient symptom burden (r = 0.24, P = .048) controlling for patient's own attachment anxiety. For both patients and caregivers, greater attachment anxiety was associated with more “holding back” from communicating their fear of death or disease progression with their spouse (r = 0.25, P = .036; r = 0.31, P = .011, respectively). Dyadic analyses revealed a positive association within the couple for attachment avoidance (r = 0.41, P < .01) and anxiety (r = 0.31, P < .01). Conclusion: Both spousal caregiver and patient attachment styles are highly relevant to illness communication patterns and patient QOL outcomes.
{"title":"Adult attachment in couples facing stage IV lung cancer: associations with patient quality-of-life outcomes and sense of life completion","authors":"Juliet L. Kroll, Morgan Jones, Aileen B Chen, C. Yang, C. Carmack, L. Cohen, K. Milbury","doi":"10.1097/OR9.0000000000000106","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000106","url":null,"abstract":"Abstract Background: Adult attachment insecurity is associated with poor psychosocial and cancer-related symptom outcomes in patients with cancer; however, there is a paucity of research around the role of the spousal caregivers' attachment in patient quality of life (QOL) at the end of life (EOL). Attachment styles may be particularly relevant for couples coping with prolonged metastatic disease, where the threat of death or disease progression is highly salient. Methods: We conducted secondary analyses on a sample of patients with stage IV non–small cell lung cancer and their spouses. Participants separately completed questionnaires of attachment style (ECR-S), relationship closeness (PAIR), illness-related communication (holding back one's fear of death or disease progression), and cancer-related distress (IES). Patients additionally completed questionnaires on sense of life completion and QOL at EOL (QUAL-E Completion Subscale and Overall QOL Item) and symptom burden (MDASI-LC). Results: For patients, greater attachment avoidance was associated with lower sense of life completion (r = −0.31, P = .009) and lower overall QOL (r = −0.35, P = .003). Greater patient attachment anxiety was also associated with a lower sense of life completion (r = −0.26, P = .034). Greater caregiver attachment avoidance and attachment anxiety were associated with patient reports of lower overall QOL (r = −0.38, P = .001, r = −0.36, P = .002, respectively). In addition, greater caregiver attachment anxiety was associated with greater patient symptom burden (r = 0.24, P = .048) controlling for patient's own attachment anxiety. For both patients and caregivers, greater attachment anxiety was associated with more “holding back” from communicating their fear of death or disease progression with their spouse (r = 0.25, P = .036; r = 0.31, P = .011, respectively). Dyadic analyses revealed a positive association within the couple for attachment avoidance (r = 0.41, P < .01) and anxiety (r = 0.31, P < .01). Conclusion: Both spousal caregiver and patient attachment styles are highly relevant to illness communication patterns and patient QOL outcomes.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46559934","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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