Pub Date : 2023-01-01Epub Date: 2023-01-23DOI: 10.1097/or9.0000000000000093
Patricia I Moreno, Blanca Noriega Esquives, Jessica L Thomas, Fiona S Horner, Joanna B Torzewski, William Gradishar, David Victorson, Frank J Penedo
Background: Women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses and arduous treatments. However, the vast majority of research has focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer and little is known about supportive care needs among women living with metastatic cancer. As part of a larger project that sought to inform the development of a psychosocial intervention, the aim of this study was to characterize supportive care needs among women with metastatic breast cancer and elucidate challenges unique to living with a life-limiting prognosis.
Methods: Four, two-hour focus groups with 22 women were audio-recorded, transcribed verbatim, and analyzed in Dedoose using a general inductive approach to code categories and extract themes.
Results: A total of 16 codes emerged from 201 participant comments regarding supportive care needs. Codes were collapsed into four supportive care need domains: 1. psychosocial, 2. physical and functional, 3. health system and information, and 4. sexuality and fertility needs. The most prevalent needs were breast cancer-related symptom burden (17.4%), lack of social support (14.9%), uncertainty (10.0%), stress management (9.0%), patient-centered care (7.5%), and sexual functioning (7.5%). More than half of needs (56.2%) were in the psychosocial domain and more than two-thirds of needs (76.8%) were in the psychosocial and physical and functional domains. Supportive care needs unique to living with metastatic breast cancer included the cumulative effects of continuously undergoing cancer treatment on symptom burden, worry from scan-to-scan regarding response to cancer treatments, diagnosis-related stigma and social isolation, end-of-life concerns, and misconceptions regarding metastatic breast cancer.
Conclusions: Findings suggest that women with metastatic breast cancer have unique supportive care needs compared to women with early-stage breast cancer that are specific to living with a life-limiting prognosis and are not typically captured in existing self-report measures of supportive care needs. Results also highlight the importance of addressing psychosocial concerns and breast cancer-related symptoms. Women with metastatic breast cancer may benefit from early access to evidence-based interventions and resources that specifically address their supportive care needs and optimize quality of life and wellbeing.
{"title":"Characterizing unique supportive care needs among women living with metastatic breast cancer: A qualitative study.","authors":"Patricia I Moreno, Blanca Noriega Esquives, Jessica L Thomas, Fiona S Horner, Joanna B Torzewski, William Gradishar, David Victorson, Frank J Penedo","doi":"10.1097/or9.0000000000000093","DOIUrl":"10.1097/or9.0000000000000093","url":null,"abstract":"<p><strong>Background: </strong>Women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses and arduous treatments. However, the vast majority of research has focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer and little is known about supportive care needs among women living with metastatic cancer. As part of a larger project that sought to inform the development of a psychosocial intervention, the aim of this study was to characterize supportive care needs among women with metastatic breast cancer and elucidate challenges unique to living with a life-limiting prognosis.</p><p><strong>Methods: </strong>Four, two-hour focus groups with 22 women were audio-recorded, transcribed verbatim, and analyzed in Dedoose using a general inductive approach to code categories and extract themes.</p><p><strong>Results: </strong>A total of 16 codes emerged from 201 participant comments regarding supportive care needs. Codes were collapsed into four supportive care need domains: 1. psychosocial, 2. physical and functional, 3. health system and information, and 4. sexuality and fertility needs. The most prevalent needs were breast cancer-related symptom burden (17.4%), lack of social support (14.9%), uncertainty (10.0%), stress management (9.0%), patient-centered care (7.5%), and sexual functioning (7.5%). More than half of needs (56.2%) were in the psychosocial domain and more than two-thirds of needs (76.8%) were in the psychosocial and physical and functional domains. Supportive care needs unique to living with metastatic breast cancer included the cumulative effects of continuously undergoing cancer treatment on symptom burden, worry from scan-to-scan regarding response to cancer treatments, diagnosis-related stigma and social isolation, end-of-life concerns, and misconceptions regarding metastatic breast cancer.</p><p><strong>Conclusions: </strong>Findings suggest that women with metastatic breast cancer have unique supportive care needs compared to women with early-stage breast cancer that are specific to living with a life-limiting prognosis and are not typically captured in existing self-report measures of supportive care needs. Results also highlight the importance of addressing psychosocial concerns and breast cancer-related symptoms. Women with metastatic breast cancer may benefit from early access to evidence-based interventions and resources that specifically address their supportive care needs and optimize quality of life and wellbeing.</p>","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10299747/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9742814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-01DOI: 10.1097/OR9.0000000000000089
Anna Visser, Lenneke Post, Joost Dekker, I. Konings
Supplemental Digital Content is Available in the Text. Abstract Background: The number of patients with stage III melanoma is rising because of increasing incidence and improved survival thanks to newly available adjuvant treatments. Patients may face specific challenges in the re-entry phase, the first 18 months after treatment, because of a high risk of recurrence and the intensity and long-term side effects of adjuvant treatment. The aims of this scoping review included summarizing the current state of evidence concerning patient psychosocial well-being and mental adjustment to the re-entry phase, as well as identifying knowledge gaps. Methods: A systematic literature search was conducted in PubMed and CINAHL using the PRISMA-ScR checklist. Results: Two qualitative and seven quantitative studies were included. Some studies found no evidence of diminished social and emotional functioning compared with the general population, while others reported emotional distress and impairment in psychological health. Regarding existential health, frequently expressed concerns encompassed fear of recurrence, hopelessness, and uncertainty about the future. Patients typically used behavioral coping, cognitive coping, and meaning-making to manage challenges in the re-entry phase. Only one study considered the effects of adjuvant therapy use on the re-entry phase. Conclusions: Limited evidence is available on the psychosocial status of patients with stage III melanoma in the re-entry phase, a phase in which patients face existential concerns. It may be beneficial to provide patients with support regarding existential concerns and meaning-making, for example by developing a practical tool to help set meaningful goals for the re-entry phase. A better understanding of the psychosocial well-being of these patients, the impact of adjuvant therapy, and the relationship between emotional distress, existential concerns, and meaning-making will require further research.
{"title":"Psychosocial well-being and mental adjustment of patients with stage III melanoma in the re-entry phase: a scoping review","authors":"Anna Visser, Lenneke Post, Joost Dekker, I. Konings","doi":"10.1097/OR9.0000000000000089","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000089","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: The number of patients with stage III melanoma is rising because of increasing incidence and improved survival thanks to newly available adjuvant treatments. Patients may face specific challenges in the re-entry phase, the first 18 months after treatment, because of a high risk of recurrence and the intensity and long-term side effects of adjuvant treatment. The aims of this scoping review included summarizing the current state of evidence concerning patient psychosocial well-being and mental adjustment to the re-entry phase, as well as identifying knowledge gaps. Methods: A systematic literature search was conducted in PubMed and CINAHL using the PRISMA-ScR checklist. Results: Two qualitative and seven quantitative studies were included. Some studies found no evidence of diminished social and emotional functioning compared with the general population, while others reported emotional distress and impairment in psychological health. Regarding existential health, frequently expressed concerns encompassed fear of recurrence, hopelessness, and uncertainty about the future. Patients typically used behavioral coping, cognitive coping, and meaning-making to manage challenges in the re-entry phase. Only one study considered the effects of adjuvant therapy use on the re-entry phase. Conclusions: Limited evidence is available on the psychosocial status of patients with stage III melanoma in the re-entry phase, a phase in which patients face existential concerns. It may be beneficial to provide patients with support regarding existential concerns and meaning-making, for example by developing a practical tool to help set meaningful goals for the re-entry phase. A better understanding of the psychosocial well-being of these patients, the impact of adjuvant therapy, and the relationship between emotional distress, existential concerns, and meaning-making will require further research.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48818273","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 : 2022-10-01DOI: 10.1097/OR9.0000000000000088
Lauren Szulczewski, Julia K. Carmody, Rachel Tillery, A. Nelson, A. Pai
Abstract Background: Hematopoietic stem cell transplantation (HCT) is an arduous but necessary treatment for many otherwise incurable diseases. It involves a complex medication regimen that is linked to significant clinical outcomes and must be learned by families before discharge. The purpose of this study was to qualitatively explore medication discharge teaching factors and to examine associations between those factors and caregiver self-perceived knowledge and efficacy. Methods: Nineteen video-recorded medication discharge teachings, conducted by hematopoietic stem cell transplantation pharmacists, were coded to identify elements of discharge teaching, including information presented, communication, and environmental factors. Caregivers also completed a semistructured interview and a short measure to assess caregiver efficacy regarding their child's medication regimen. Results: Pharmacists were consistent in their review of the names, dosages, and frequency of the medications being prescribed. However, there was variability regarding information provided about adherence, specific learnings (ie, how to read/fill syringe), and behavioral strategies to promote adherence (ie, adjust timing to fit family's schedule). Immediately and 1 week after the teaching, caregivers reported high levels of confidence regarding their ability to understand and manage their child's medication regimen. Conclusion: Teaching families about the prescribed medication regimen is a critical component of the discharge process. The current findings suggest that increasing the consistency with which information is provided to families regarding the effective management of the medication regimen could potentially be a method to facilitate adherence.
{"title":"Medication discharge teaching in pediatric hematopoietic stem cell transplantation: teaching characteristics, caregiver perceptions, and postdischarge adherence","authors":"Lauren Szulczewski, Julia K. Carmody, Rachel Tillery, A. Nelson, A. Pai","doi":"10.1097/OR9.0000000000000088","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000088","url":null,"abstract":"Abstract Background: Hematopoietic stem cell transplantation (HCT) is an arduous but necessary treatment for many otherwise incurable diseases. It involves a complex medication regimen that is linked to significant clinical outcomes and must be learned by families before discharge. The purpose of this study was to qualitatively explore medication discharge teaching factors and to examine associations between those factors and caregiver self-perceived knowledge and efficacy. Methods: Nineteen video-recorded medication discharge teachings, conducted by hematopoietic stem cell transplantation pharmacists, were coded to identify elements of discharge teaching, including information presented, communication, and environmental factors. Caregivers also completed a semistructured interview and a short measure to assess caregiver efficacy regarding their child's medication regimen. Results: Pharmacists were consistent in their review of the names, dosages, and frequency of the medications being prescribed. However, there was variability regarding information provided about adherence, specific learnings (ie, how to read/fill syringe), and behavioral strategies to promote adherence (ie, adjust timing to fit family's schedule). Immediately and 1 week after the teaching, caregivers reported high levels of confidence regarding their ability to understand and manage their child's medication regimen. Conclusion: Teaching families about the prescribed medication regimen is a critical component of the discharge process. The current findings suggest that increasing the consistency with which information is provided to families regarding the effective management of the medication regimen could potentially be a method to facilitate adherence.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43118310","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 : 2022-10-01DOI: 10.1097/OR9.0000000000000087
Berglind Halldórsdóttir, G. Michel, Julia Baenziger
Abstract Background: Childhood cancer affects not only the patients, but their entire family. We systematically reviewed recent evidence of post-traumatic growth (PTG) among family members of childhood cancer survivors (CCS). Methods: We updated a systematic review of PTG among family members of CCS (including new evidence from March 2010 to December 2021). We screened 4 databases (PubMed, PsycINFO, CINAHL, and SCOPUS). Key study information and results were extracted for the quality appraisal. We narratively synthesized the evidence for reported levels and domains of PTG in caregivers (aim 1) and siblings (aim 2) and associated sociodemographic and psychosocial characteristics (aim 3) in families of CCS. Results: Of the 646 identified articles, 16 met eligibility criteria. Eleven studies used quantitative (all cross-sectional), 3 qualitative, and 2 mixed methods. Participants included parents and other primary caregivers (11 studies), grandparents (1 study), and siblings (5 studies). Most caregivers reported high levels of PTG, most often involving personal growth and stronger/closer family relationships. Siblings reported low-to-moderate PTG, with an emphasis on appreciating life and becoming more independent and mature. While sociodemographic and clinical characteristics were not associated with PTG, psychosocial factors such as personal resources, including social support and coping strategies, were associated with PTG outcomes. Conclusion: In the past decade, few studies have assessed PTG among families of CCS despite the call to focus on families in a previous review. We found that social support and proactive coping strategies may be the most helpful in promoting PTG.
{"title":"Post-traumatic growth in family members of childhood cancer survivors—an updated systematic review","authors":"Berglind Halldórsdóttir, G. Michel, Julia Baenziger","doi":"10.1097/OR9.0000000000000087","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000087","url":null,"abstract":"Abstract Background: Childhood cancer affects not only the patients, but their entire family. We systematically reviewed recent evidence of post-traumatic growth (PTG) among family members of childhood cancer survivors (CCS). Methods: We updated a systematic review of PTG among family members of CCS (including new evidence from March 2010 to December 2021). We screened 4 databases (PubMed, PsycINFO, CINAHL, and SCOPUS). Key study information and results were extracted for the quality appraisal. We narratively synthesized the evidence for reported levels and domains of PTG in caregivers (aim 1) and siblings (aim 2) and associated sociodemographic and psychosocial characteristics (aim 3) in families of CCS. Results: Of the 646 identified articles, 16 met eligibility criteria. Eleven studies used quantitative (all cross-sectional), 3 qualitative, and 2 mixed methods. Participants included parents and other primary caregivers (11 studies), grandparents (1 study), and siblings (5 studies). Most caregivers reported high levels of PTG, most often involving personal growth and stronger/closer family relationships. Siblings reported low-to-moderate PTG, with an emphasis on appreciating life and becoming more independent and mature. While sociodemographic and clinical characteristics were not associated with PTG, psychosocial factors such as personal resources, including social support and coping strategies, were associated with PTG outcomes. Conclusion: In the past decade, few studies have assessed PTG among families of CCS despite the call to focus on families in a previous review. We found that social support and proactive coping strategies may be the most helpful in promoting PTG.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42868243","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 : 2022-10-01DOI: 10.1097/OR9.0000000000000090
J. Shaw, Polly E. Havard, H. Dhillon, B. Kelly, Lisa Beatty, I. Juraskova, L. Sharpe, M. Cigolini, R. Chan, L. Kirsten, M. Best, P. Butow
Supplemental Digital Content is Available in the Text. Abstract Background: Cross-sectional research has highlighted the emotional impacts of coronavirus disease 2019 (COVID-19) in cancer communities. The aim of this study was to extend findings and to provide a longitudinal perspective of emotional effects of COVID-19 on a range of participants, including patients with cancer, their family members, and oncology health professionals (HPs) in Australia. Methods: This mixed-methods, longitudinal study incorporated semistructured interviews and psychological well-being survey data collected at three time points between June 2020 and October 2021. Results: Seventy-seven participants volunteered at time point 1 (T1; 32 patients, 16 caregivers, 29 HPs), 52 at timepoint 2 (23 patients, 10 caregivers, 19 HPs), and 43 at timepoint 3 (19 patients, 8 caregivers, 16 HPs). Overall, participants were psychologically well; however, elevated depressive symptoms were detected in HPs by timepoint 3. Qualitative results highlighted the emotional toll of COVID-19 for all participant groups over time. Three shared themes emerged: (1) balancing fear and safety, (2) uncertainty in an ever-changing situation, and (3) fatigue due to lack of support and sense of isolation. An additional theme unique to HPs was also identified: (4) a sense of dread for what is to come in an already exhausted workforce. Conclusion: Despite Australia's relatively low COVID-19 case numbers, an emotional toll on the cancer community was apparent. Longitudinal results indicate consistency of themes over time with the burden for HPs adding a theme by the third interview. Participants were challenged to balance needs of personal safety against cancer priorities in an environment of uncertainty and isolation. Over time, a sense of fatigue emerged, and for HPs, increased workloads left many feeling overwhelmed and unsupported with a sense of dread around future outcomes.
{"title":"The emotional impact of COVID-19 on Australian cancer patients, their caregivers, and oncology health professionals over time: a longitudinal qualitative study","authors":"J. Shaw, Polly E. Havard, H. Dhillon, B. Kelly, Lisa Beatty, I. Juraskova, L. Sharpe, M. Cigolini, R. Chan, L. Kirsten, M. Best, P. Butow","doi":"10.1097/OR9.0000000000000090","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000090","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: Cross-sectional research has highlighted the emotional impacts of coronavirus disease 2019 (COVID-19) in cancer communities. The aim of this study was to extend findings and to provide a longitudinal perspective of emotional effects of COVID-19 on a range of participants, including patients with cancer, their family members, and oncology health professionals (HPs) in Australia. Methods: This mixed-methods, longitudinal study incorporated semistructured interviews and psychological well-being survey data collected at three time points between June 2020 and October 2021. Results: Seventy-seven participants volunteered at time point 1 (T1; 32 patients, 16 caregivers, 29 HPs), 52 at timepoint 2 (23 patients, 10 caregivers, 19 HPs), and 43 at timepoint 3 (19 patients, 8 caregivers, 16 HPs). Overall, participants were psychologically well; however, elevated depressive symptoms were detected in HPs by timepoint 3. Qualitative results highlighted the emotional toll of COVID-19 for all participant groups over time. Three shared themes emerged: (1) balancing fear and safety, (2) uncertainty in an ever-changing situation, and (3) fatigue due to lack of support and sense of isolation. An additional theme unique to HPs was also identified: (4) a sense of dread for what is to come in an already exhausted workforce. Conclusion: Despite Australia's relatively low COVID-19 case numbers, an emotional toll on the cancer community was apparent. Longitudinal results indicate consistency of themes over time with the burden for HPs adding a theme by the third interview. Participants were challenged to balance needs of personal safety against cancer priorities in an environment of uncertainty and isolation. Over time, a sense of fatigue emerged, and for HPs, increased workloads left many feeling overwhelmed and unsupported with a sense of dread around future outcomes.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"4 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41730618","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 : 2022-10-01DOI: 10.1097/OR9.0000000000000086
Yvonne L Luigjes-Huizer, C. Helsper, Marloes M. J. G. Gerrits, N. D. de Wit, M. L. van der Lee
Supplemental Digital Content is Available in the Text. Abstract Background: More than half of cancer survivors experience fear of cancer recurrence (FCR). There has been a call for easily accessible, inexpensive interventions for moderate FCR to complement existing specialized care. In the randomized BLANKET trial, we investigated the effectiveness of a short, primary care intervention for FCR. We report on the potential of the intervention and the suitability of primary care to offer this intervention. Methods: The BLANKET trial is a cluster randomized controlled trial with change in FCR severity (severity subscale of the Fear of Cancer Recurrence Inventory) as its main outcome. Participating general practitioners invited all patients who completed successful curative cancer treatment between 3 months and 10 years ago. We report effect measures, outcome of our recruitment strategy, intervention uptake, reasons not to participate, and experiences with the intervention. Results: Sixty-two of 1368 (4.5%) invited cancer survivors participated. Main reported reasons not to participate were not experiencing FCR and not wanting help. Owing to the low participation, we could not robustly evaluate the intervention's effectiveness. Indicatively, in the intention-to-treat analysis, FCR severity decreased from T0 to T1 by 2.7 points (standard deviation [SD] = 4.7) in the intervention group (n = 27) and 1.8 points (SD = 3.6) in the control group (n = 18). In the per-protocol analysis, the decreases were 3.5 points (SD = 4.5) and 0.7 points (SD = 2.7), respectively. Conclusion: Although the prevalence of FCR and the need for help for FCR are high according to the literature, the uptake of our primary care–based intervention was low. Although the intervention shows potential, alternative delivery routes need to be explored because of the low number of patients who need help for FCR per primary care practice. We recommend additional research on the impact of FCR, on which patients require and desire help, and on what kind of intervention and setting are fitting for what patients.
{"title":"Need for a primary care–based intervention for fear of cancer recurrence: conclusions from the BLANKET trial","authors":"Yvonne L Luigjes-Huizer, C. Helsper, Marloes M. J. G. Gerrits, N. D. de Wit, M. L. van der Lee","doi":"10.1097/OR9.0000000000000086","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000086","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: More than half of cancer survivors experience fear of cancer recurrence (FCR). There has been a call for easily accessible, inexpensive interventions for moderate FCR to complement existing specialized care. In the randomized BLANKET trial, we investigated the effectiveness of a short, primary care intervention for FCR. We report on the potential of the intervention and the suitability of primary care to offer this intervention. Methods: The BLANKET trial is a cluster randomized controlled trial with change in FCR severity (severity subscale of the Fear of Cancer Recurrence Inventory) as its main outcome. Participating general practitioners invited all patients who completed successful curative cancer treatment between 3 months and 10 years ago. We report effect measures, outcome of our recruitment strategy, intervention uptake, reasons not to participate, and experiences with the intervention. Results: Sixty-two of 1368 (4.5%) invited cancer survivors participated. Main reported reasons not to participate were not experiencing FCR and not wanting help. Owing to the low participation, we could not robustly evaluate the intervention's effectiveness. Indicatively, in the intention-to-treat analysis, FCR severity decreased from T0 to T1 by 2.7 points (standard deviation [SD] = 4.7) in the intervention group (n = 27) and 1.8 points (SD = 3.6) in the control group (n = 18). In the per-protocol analysis, the decreases were 3.5 points (SD = 4.5) and 0.7 points (SD = 2.7), respectively. Conclusion: Although the prevalence of FCR and the need for help for FCR are high according to the literature, the uptake of our primary care–based intervention was low. Although the intervention shows potential, alternative delivery routes need to be explored because of the low number of patients who need help for FCR per primary care practice. We recommend additional research on the impact of FCR, on which patients require and desire help, and on what kind of intervention and setting are fitting for what patients.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42331843","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 : 2022-10-01DOI: 10.1097/OR9.0000000000000085
Lotte Van Noyen, Sabine E. Markovitz, N. Broers, M. Peters
Supplemental Digital Content is Available in the Text. Abstract Background: There is some controversy whether psychological distress after breast cancer diagnosis and treatment remains elevated at the long-term follow-up. This study compares the prevalence of psychological distress and anxiety and depressive disorders between patients with breast cancer and women without cancer in a prospective longitudinal design. Moreover, risk and protective factors for psychological distress and anxiety and depressive disorders were compared between the 2 groups. Methods: Two hundred fifty-three patients with breast cancer who underwent surgery completed a series of self-report questionnaires immediately after surgery and 18 months later. In addition, 211 female participants without being diagnosed with cancer were assessed at the same time points. Outcomes are psychological distress as measured with the Hospital Anxiety and Depression Scale and possible presence of anxiety and depressive disorders measured with the Patient Health Questionnaire. Trait resilience, optimism, and neuroticism were investigated as protective or risk factors for the development of psychological distress, anxiety, and depression. Results: We found that the levels of psychological distress and the prevalence of anxiety and depressive disorders are higher in the breast cancer group both at baseline and at 18 months of follow-up. Trait resilience and optimism were observed to be protective factors, and neuroticism was found to be a risk factor in both the breast cancer group and the comparison group. Conclusions: Psychological distress, depression, and anxiety remain elevated in patients with breast cancer over a period of one-and-a-half year. The identified protective and risk factors for these conditions are not unique for patients with breast cancer.
{"title":"Prevalence and predictors of psychological distress in women diagnosed with breast cancer and women without breast cancer: a prospective study of psychological risk and resilience factors","authors":"Lotte Van Noyen, Sabine E. Markovitz, N. Broers, M. Peters","doi":"10.1097/OR9.0000000000000085","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000085","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: There is some controversy whether psychological distress after breast cancer diagnosis and treatment remains elevated at the long-term follow-up. This study compares the prevalence of psychological distress and anxiety and depressive disorders between patients with breast cancer and women without cancer in a prospective longitudinal design. Moreover, risk and protective factors for psychological distress and anxiety and depressive disorders were compared between the 2 groups. Methods: Two hundred fifty-three patients with breast cancer who underwent surgery completed a series of self-report questionnaires immediately after surgery and 18 months later. In addition, 211 female participants without being diagnosed with cancer were assessed at the same time points. Outcomes are psychological distress as measured with the Hospital Anxiety and Depression Scale and possible presence of anxiety and depressive disorders measured with the Patient Health Questionnaire. Trait resilience, optimism, and neuroticism were investigated as protective or risk factors for the development of psychological distress, anxiety, and depression. Results: We found that the levels of psychological distress and the prevalence of anxiety and depressive disorders are higher in the breast cancer group both at baseline and at 18 months of follow-up. Trait resilience and optimism were observed to be protective factors, and neuroticism was found to be a risk factor in both the breast cancer group and the comparison group. Conclusions: Psychological distress, depression, and anxiety remain elevated in patients with breast cancer over a period of one-and-a-half year. The identified protective and risk factors for these conditions are not unique for patients with breast cancer.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46230218","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 : 2022-07-01DOI: 10.1097/OR9.0000000000000077
S. Lebel, C. Maheu, C. Tomei, Brittany Mutsaers, L. Bernstein, C. Courbasson, S. Ferguson, Cheryl Harris, L. Jolicoeur, Monique Lefebvre, L. Muraca, A. Ramanakumar, Mina D. Singh, Julia Parrott
Abstract Background: Meta-analyses have demonstrated that brief interventions can address fear of cancer recurrence (FCR), but their mechanisms of action are largely unknown. Our goal was to identify the mediators of treatment efficacy of the Fear Of Recurrence Therapy (FORT) intervention using data from a multisite randomized controlled trial targeting FCR. That randomized controlled trial compared a 6-week cognitive-existential group intervention with an active control group. Methods: Participants (n = 135) were women diagnosed with stage I-III breast or gynecological cancer who were assessed at 4 time points (pretherapy, post-therapy, 3-month, and 6-month follow-up). The primary outcome, changes in FCR at 6 months, was measured with the Fear of Cancer Recurrence Inventory. We examined 6 mediators based on our theoretical model of FCR: perceived risk of recurrence, uncertainty in illness, intolerance of uncertainty, positive beliefs about worrying, reassurance-seeking, and cognitive avoidance. Changes in the possible mediator variables were simultaneously investigated to predict changes in FCR using Generalized Structural Equation Models with robust variance estimation. Results: FORT predicted FCR at 6 months in univariate analyses (β = −8.93, P = .0001). In the model including the 6 possible mediators, changes in uncertainty in illness (β = −8.72, P < .0001) and cognitive avoidance (β = −8.36, P < .0001) mediated the relationship between treatment and changes in FCR. However, FORT still predicted changes in FCR at 6 months (β = −6.35, P = .02), suggesting partial mediation. Conclusions: We identified 2 mechanisms of action that can be incorporated in future interventions. However, other processes that underlie the efficacy of these interventions need to be uncovered.
背景:荟萃分析表明,简短的干预可以解决癌症复发恐惧(FCR),但其作用机制在很大程度上是未知的。我们的目的是利用一项针对FCR的多地点随机对照试验的数据,确定恐惧复发治疗(FORT)干预治疗效果的介质。这项随机对照试验将为期6周的认知存在干预组与积极对照组进行了比较。方法:参与者(n = 135)是诊断为I-III期乳腺癌或妇科癌症的妇女,在4个时间点(治疗前、治疗后、3个月和6个月的随访)进行评估。主要结局是6个月时FCR的变化,用癌症复发恐惧量表测量。基于我们的FCR理论模型,我们检查了6个中介:复发的感知风险、疾病的不确定性、对不确定性的不容忍、对担忧的积极信念、寻求安慰和认知回避。同时研究了可能中介变量的变化,使用具有稳健方差估计的广义结构方程模型来预测FCR的变化。结果:在单变量分析中,FORT预测6个月时的FCR (β = - 8.93, P = 0.0001)。在包含6种可能介质的模型中,疾病不确定性的变化(β = - 8.72, P < 0.0001)和认知回避(β = - 8.36, P < 0.0001)介导了治疗与FCR变化之间的关系。然而,FORT仍然预测6个月时FCR的变化(β = - 6.35, P = 0.02),提示部分介导。结论:我们确定了两种可纳入未来干预措施的作用机制。然而,需要发现这些干预措施有效性背后的其他过程。
{"title":"Mechanisms of change of a cognitive-existential group intervention for fear of cancer recurrence: mediation analyses of the FORT trial","authors":"S. Lebel, C. Maheu, C. Tomei, Brittany Mutsaers, L. Bernstein, C. Courbasson, S. Ferguson, Cheryl Harris, L. Jolicoeur, Monique Lefebvre, L. Muraca, A. Ramanakumar, Mina D. Singh, Julia Parrott","doi":"10.1097/OR9.0000000000000077","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000077","url":null,"abstract":"Abstract Background: Meta-analyses have demonstrated that brief interventions can address fear of cancer recurrence (FCR), but their mechanisms of action are largely unknown. Our goal was to identify the mediators of treatment efficacy of the Fear Of Recurrence Therapy (FORT) intervention using data from a multisite randomized controlled trial targeting FCR. That randomized controlled trial compared a 6-week cognitive-existential group intervention with an active control group. Methods: Participants (n = 135) were women diagnosed with stage I-III breast or gynecological cancer who were assessed at 4 time points (pretherapy, post-therapy, 3-month, and 6-month follow-up). The primary outcome, changes in FCR at 6 months, was measured with the Fear of Cancer Recurrence Inventory. We examined 6 mediators based on our theoretical model of FCR: perceived risk of recurrence, uncertainty in illness, intolerance of uncertainty, positive beliefs about worrying, reassurance-seeking, and cognitive avoidance. Changes in the possible mediator variables were simultaneously investigated to predict changes in FCR using Generalized Structural Equation Models with robust variance estimation. Results: FORT predicted FCR at 6 months in univariate analyses (β = −8.93, P = .0001). In the model including the 6 possible mediators, changes in uncertainty in illness (β = −8.72, P < .0001) and cognitive avoidance (β = −8.36, P < .0001) mediated the relationship between treatment and changes in FCR. However, FORT still predicted changes in FCR at 6 months (β = −6.35, P = .02), suggesting partial mediation. Conclusions: We identified 2 mechanisms of action that can be incorporated in future interventions. However, other processes that underlie the efficacy of these interventions need to be uncovered.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42581429","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 : 2022-07-01DOI: 10.1097/OR9.0000000000000083
Mariam Al-Awadhi, B. Gascon, Nawar Albarak, Ghazlan Aldeweesh, A. Hamadah, Hazim Abdulkarim, Yvonne W Leung, G. Rodin, Madeline Li
Supplemental Digital Content is Available in the Text. Abstract Background: This report describes the implementation of a comprehensive distress screening program at the Kuwait Cancer Control Center (KCCC), the first such initiative in the Middle East. A Kuwait-adapted version of the Distress Assessment and Response Tool (K-DART) was used in this screening program. Methods: Paper-based K-DART surveys were piloted in the lymphoma clinic at KCCC in July 2013, followed by gradual hospital-wide expansion. K-DART included patient-reported outcome measures to assess cancer-related physical and emotional symptoms and practical problems. English and Arabic translations of these measures were used. Trained nurses administered K-DART and followed up with the oncologist for patients with moderate-to-high levels of distress. Descriptive data are reported for prevalence of distress, psychosocial oncology program (PSOP) referral rates, and patient and staff satisfaction with K-DART. Results: A total of 1,153 K-DART surveys were completed by 618 patients in the pilot lymphoma clinic, with screening rates increasing from 33.5% to 75.3% over the first 12 months of implementation. Among all K-DART completers, 85/618 (13.8%) were referred to PSOP, whereas only 1/955 (0.1%) of K-DART noncompleters were referred to PSOP. After hospital-wide expansion of screening, a total of 2,017 patients completed K-DART in the first year of implementation. Both patients and physicians reported high satisfaction with K-DART, which was reported to enhance patient–physician communication and improve clinical care. Conclusion: Implementation of K-DART in a Middle Eastern country is feasible and facilitates a more comprehensive approach to cancer care, contributing to the successful establishment of a PSOP at the KCCC.
{"title":"Implementation of the Distress Assessment and Response Tool at the Kuwait Cancer Control Centre","authors":"Mariam Al-Awadhi, B. Gascon, Nawar Albarak, Ghazlan Aldeweesh, A. Hamadah, Hazim Abdulkarim, Yvonne W Leung, G. Rodin, Madeline Li","doi":"10.1097/OR9.0000000000000083","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000083","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Abstract Background: This report describes the implementation of a comprehensive distress screening program at the Kuwait Cancer Control Center (KCCC), the first such initiative in the Middle East. A Kuwait-adapted version of the Distress Assessment and Response Tool (K-DART) was used in this screening program. Methods: Paper-based K-DART surveys were piloted in the lymphoma clinic at KCCC in July 2013, followed by gradual hospital-wide expansion. K-DART included patient-reported outcome measures to assess cancer-related physical and emotional symptoms and practical problems. English and Arabic translations of these measures were used. Trained nurses administered K-DART and followed up with the oncologist for patients with moderate-to-high levels of distress. Descriptive data are reported for prevalence of distress, psychosocial oncology program (PSOP) referral rates, and patient and staff satisfaction with K-DART. Results: A total of 1,153 K-DART surveys were completed by 618 patients in the pilot lymphoma clinic, with screening rates increasing from 33.5% to 75.3% over the first 12 months of implementation. Among all K-DART completers, 85/618 (13.8%) were referred to PSOP, whereas only 1/955 (0.1%) of K-DART noncompleters were referred to PSOP. After hospital-wide expansion of screening, a total of 2,017 patients completed K-DART in the first year of implementation. Both patients and physicians reported high satisfaction with K-DART, which was reported to enhance patient–physician communication and improve clinical care. Conclusion: Implementation of K-DART in a Middle Eastern country is feasible and facilitates a more comprehensive approach to cancer care, contributing to the successful establishment of a PSOP at the KCCC.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48983594","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 : 2022-07-01DOI: 10.1097/OR9.0000000000000076
G. Shapiro, K. Mah, F. D. de Vries, C. Zimmermann, Madeline Li, S. Hales, G. Rodin
Supplemental Digital Content is Available in the Text. Background: The role of gender in psychotherapy has been widely recognized but infrequently investigated in psychotherapy trials. We conducted a secondary analysis of data from a randomized controlled trial of Managing Cancer and Living Meaningfully (CALM), a supportive-expressive intervention for individuals with advanced cancer, to examine gender effects in the feasibility, acceptability, perceived benefit, and effectiveness of CALM. Methods: Trial participants, outpatients with advanced cancer (N = 305, 40% men and 60% women), completed measures at baseline, 3 months (t1), and 6 months (t2). We investigated gender differences in participation rates, attrition rates, number of CALM sessions received, and perceived benefit of CALM. Separate subgroup analyses of data and gender × treatment group moderator analyses from men and women were compared in examining treatment effects on depressive symptoms, end-of-life preparation, and death anxiety at each follow-up period. Results: No gender differences were observed in participation or attrition rates, number of CALM sessions received, or perceived benefit of CALM. In subgroup analyses at t2, men in CALM reported significantly lower depressive symptoms than men in usual care (UC; P = .017), women in CALM with moderate baseline death anxiety reported lower death anxiety than women in UC (P = .009), and both men (P = .022) and women (P = .016) in CALM reported greater end-of-life preparation than those in UC. There were no significant gender × treatment group interaction effects on any outcome. Conclusions: CALM therapy is feasible, acceptable, and beneficial on different outcomes for men and women. Further clinical trials with comprehensive measures of gender identity are needed to evaluate gender effects in psychotherapeutic interventions for patients with advanced disease.
{"title":"A gender-sensitive analysis of the feasibility and benefit of a psychological intervention for patients with advanced cancer","authors":"G. Shapiro, K. Mah, F. D. de Vries, C. Zimmermann, Madeline Li, S. Hales, G. Rodin","doi":"10.1097/OR9.0000000000000076","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000076","url":null,"abstract":"Supplemental Digital Content is Available in the Text. Background: The role of gender in psychotherapy has been widely recognized but infrequently investigated in psychotherapy trials. We conducted a secondary analysis of data from a randomized controlled trial of Managing Cancer and Living Meaningfully (CALM), a supportive-expressive intervention for individuals with advanced cancer, to examine gender effects in the feasibility, acceptability, perceived benefit, and effectiveness of CALM. Methods: Trial participants, outpatients with advanced cancer (N = 305, 40% men and 60% women), completed measures at baseline, 3 months (t1), and 6 months (t2). We investigated gender differences in participation rates, attrition rates, number of CALM sessions received, and perceived benefit of CALM. Separate subgroup analyses of data and gender × treatment group moderator analyses from men and women were compared in examining treatment effects on depressive symptoms, end-of-life preparation, and death anxiety at each follow-up period. Results: No gender differences were observed in participation or attrition rates, number of CALM sessions received, or perceived benefit of CALM. In subgroup analyses at t2, men in CALM reported significantly lower depressive symptoms than men in usual care (UC; P = .017), women in CALM with moderate baseline death anxiety reported lower death anxiety than women in UC (P = .009), and both men (P = .022) and women (P = .016) in CALM reported greater end-of-life preparation than those in UC. There were no significant gender × treatment group interaction effects on any outcome. Conclusions: CALM therapy is feasible, acceptable, and beneficial on different outcomes for men and women. Further clinical trials with comprehensive measures of gender identity are needed to evaluate gender effects in psychotherapeutic interventions for patients with advanced disease.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42596875","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}