Anne Maas, Heleen Maurice-Stam, E A M Lieke Feijen, Jop C Teepen, Alied M van der Aa-van Delden, Nina Streefkerk, Eline van Dulmen-den Broeder, Wim J E Tissing, Jacqueline J Loonen, Helena J H van der Pal, Andrica C H de Vries, Marry M van den Heuvel-Eibrink, Cécile Ronckers, Sebastian Neggers, Dorine Bresters, Marloes Louwerens, Birgitta A B Versluys, Margriet van der Heiden-van der Loo, Leontien C M Kremer, Martha Grootenhuis
Objective: This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS).
Methods: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self-Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self-Rating Scale for Post-Traumatic Stress Disorder, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and Short Form-36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004).
Results: A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self-esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self-esteem (10×), and perceived burden (9×). Self-esteem (all β ≤ 0.47) and perceived burden (all β ≤ 0.38) demonstrated strongest associations of medium/large size.
Conclusions: Perceptions of childhood cancer, illness cognitions, self-esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio-demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self-esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges.
{"title":"Risk and Protective Factors of Psychosocial Functioning in Survivors of Childhood Cancer: Results of the DCCSS-LATER Study.","authors":"Anne Maas, Heleen Maurice-Stam, E A M Lieke Feijen, Jop C Teepen, Alied M van der Aa-van Delden, Nina Streefkerk, Eline van Dulmen-den Broeder, Wim J E Tissing, Jacqueline J Loonen, Helena J H van der Pal, Andrica C H de Vries, Marry M van den Heuvel-Eibrink, Cécile Ronckers, Sebastian Neggers, Dorine Bresters, Marloes Louwerens, Birgitta A B Versluys, Margriet van der Heiden-van der Loo, Leontien C M Kremer, Martha Grootenhuis","doi":"10.1002/pon.9313","DOIUrl":"https://doi.org/10.1002/pon.9313","url":null,"abstract":"<p><strong>Objective: </strong>This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS).</p><p><strong>Methods: </strong>CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self-Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self-Rating Scale for Post-Traumatic Stress Disorder, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and Short Form-36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004).</p><p><strong>Results: </strong>A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self-esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self-esteem (10×), and perceived burden (9×). Self-esteem (all β ≤ 0.47) and perceived burden (all β ≤ 0.38) demonstrated strongest associations of medium/large size.</p><p><strong>Conclusions: </strong>Perceptions of childhood cancer, illness cognitions, self-esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio-demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self-esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e9313"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142366351","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
K L Luu, P Mager, D Nieboer, F E Witkamp, L J Jabbarian, S Payne, M Groenvold, K Pollock, G Miccinesi, L Deliens, J J M van Delden, A van der Heide, I J Korfage, J A C Rietjens
Objective: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors.
Methods: Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4-16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies.
Results: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%).
Conclusions: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.
{"title":"Coping Strategies of Patients With Advanced Lung or Colorectal Cancer Over Time: Insights From the International ACTION Study.","authors":"K L Luu, P Mager, D Nieboer, F E Witkamp, L J Jabbarian, S Payne, M Groenvold, K Pollock, G Miccinesi, L Deliens, J J M van Delden, A van der Heide, I J Korfage, J A C Rietjens","doi":"10.1002/pon.9315","DOIUrl":"https://doi.org/10.1002/pon.9315","url":null,"abstract":"<p><strong>Objective: </strong>A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors.</p><p><strong>Methods: </strong>Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4-16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies.</p><p><strong>Results: </strong>At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%).</p><p><strong>Conclusions: </strong>Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e9315"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142372698","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cristiane Decat Bergerot, Marianne Razavi, Paulo Gustavo Bergerot, Edvane Birelo Lopes De Domenico, Karen Lynn Clark, Matthew Loscalzo, Sumanta Kumar Pal, William Dale
Objective: Biopsychosocial distress is a common yet often underestimated complication in cancer care. We sought to translate and evaluate the psychometric properties of SupportScreen distress assessment tool in Brazil.
Methods: A cancer cohort study was conducted at a public hospital in Brazil. The SupportScreen tool underwent transcultural translation into Portuguese. Eligible patients completed the SupportScreen, Distress Thermometer (DT), Hospital Anxiety and Depression Scale (HADS), and Functional Assessment of Cancer Therapy-General version (FACT-G). Statistical analyses included confirmatory and exploratory factor analyses (CFA and EFA), comparisons with established distress tools, and assessments of associations with patients' characteristics.
Results: A total of 302 patients were assessed (M:F 35.4%:64.6%; median age: 55). Most patients were diagnosed with breast (29.1%) and gastrointestinal cancer (20.5%), at advanced disease stage (78.8%). CFA identified optimal models for emotional and physical distress; EFA revealed two factors for the logistics of medical care: practical and medical system distress. The concurrent validity of subscales demonstrated significant correlations between distress domains. Sensitivity analyses indicated good performance of emotional and physical domains in identifying distress compared to gold standard criteria. Female patients were more likely to report high emotional distress, while younger age and late disease stage were associated with higher physical distress. Additionally, late disease stage was linked to higher practical distress.
Conclusion: Emotional and physical domains demonstrated validity and reliability, aligning with validated measures. Logistics of medical care distress revealed practical and medical system dimensions, expanding understanding of patient challenges. The SupportScreen tool exhibited concurrent validity and sensitivity in identifying distress.
{"title":"Validation of a Biopsychosocial Distress Screening Tool, SupportScreen, in a Brazilian Cancer Center.","authors":"Cristiane Decat Bergerot, Marianne Razavi, Paulo Gustavo Bergerot, Edvane Birelo Lopes De Domenico, Karen Lynn Clark, Matthew Loscalzo, Sumanta Kumar Pal, William Dale","doi":"10.1002/pon.70001","DOIUrl":"https://doi.org/10.1002/pon.70001","url":null,"abstract":"<p><strong>Objective: </strong>Biopsychosocial distress is a common yet often underestimated complication in cancer care. We sought to translate and evaluate the psychometric properties of SupportScreen distress assessment tool in Brazil.</p><p><strong>Methods: </strong>A cancer cohort study was conducted at a public hospital in Brazil. The SupportScreen tool underwent transcultural translation into Portuguese. Eligible patients completed the SupportScreen, Distress Thermometer (DT), Hospital Anxiety and Depression Scale (HADS), and Functional Assessment of Cancer Therapy-General version (FACT-G). Statistical analyses included confirmatory and exploratory factor analyses (CFA and EFA), comparisons with established distress tools, and assessments of associations with patients' characteristics.</p><p><strong>Results: </strong>A total of 302 patients were assessed (M:F 35.4%:64.6%; median age: 55). Most patients were diagnosed with breast (29.1%) and gastrointestinal cancer (20.5%), at advanced disease stage (78.8%). CFA identified optimal models for emotional and physical distress; EFA revealed two factors for the logistics of medical care: practical and medical system distress. The concurrent validity of subscales demonstrated significant correlations between distress domains. Sensitivity analyses indicated good performance of emotional and physical domains in identifying distress compared to gold standard criteria. Female patients were more likely to report high emotional distress, while younger age and late disease stage were associated with higher physical distress. Additionally, late disease stage was linked to higher practical distress.</p><p><strong>Conclusion: </strong>Emotional and physical domains demonstrated validity and reliability, aligning with validated measures. Logistics of medical care distress revealed practical and medical system dimensions, expanding understanding of patient challenges. The SupportScreen tool exhibited concurrent validity and sensitivity in identifying distress.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e70001"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506710","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Inge J Veldhuizen, Stephen W Dusza, Alyce Kuo, Abdullah Aleisa, Elliot Blue, Sushmita Adhikari, Umer Nadir, Kim Le, Soroush Kazemi, Adam V Sutton, Rajiv I Nijhawan, Daniel B Eisen, Anthony M Rossi, Divya Srivastava, Ashley Wysong, Kishwer S Nehal, Anne F Klassen, Erica H Lee
Objective: The FACE-Q Skin Cancer Module is a Patient-Reported Outcome Measure (PROM) utilized to assess outcomes following facial skin cancer resection. However, the lack of Minimal Important Difference (MID) estimates hinders the interpretability of the PROM scores. This study established MID estimates for the four outcome scales from the FACE-Q Skin Cancer Module using distribution-based methods.
Methods: A prospective cohort study at four hospitals in the United States, enrolled participants who underwent Mohs Micrographic Surgery (MMS) for facial skin cancer between April 2020 and April 2022. Participants completed the Satisfaction with Facial Appearance, Appearance-related Psychosocial Distress, Cancer Worry, and Appraisal of Scars scales at four time points: pre-operatively, 2-week, 6-month, and 1-year post-surgery.
Results: A total of 990 patients participated in the study, with completion rates of 98.4% for the pre-operative assessment, 70.8% at 2 weeks, 59.3% at 6 months, and 60.4% at 1 year. MID estimates, calculated using 0.2 standard deviation and 0.2 standardized response mean, were determined for the four scales. The mean MID estimates, based on a Rasch transformed score ranging from 0 to 100, were 5 for the Appraisal of Scars scale and 4 for the remaining three scales.
Conclusion: This multicenter study provides valuable MID estimates for the FACE-Q Skin Cancer Module, specifically for the MMS patient population, enabling clinicians and researchers to better interpret scores, determine appropriate sample sizes, and apply the findings in clinical care.
{"title":"Clinical Significance Unveiled: Understanding the Meaning of FACE-Q Skin Cancer Scores for Improved Patient Care.","authors":"Inge J Veldhuizen, Stephen W Dusza, Alyce Kuo, Abdullah Aleisa, Elliot Blue, Sushmita Adhikari, Umer Nadir, Kim Le, Soroush Kazemi, Adam V Sutton, Rajiv I Nijhawan, Daniel B Eisen, Anthony M Rossi, Divya Srivastava, Ashley Wysong, Kishwer S Nehal, Anne F Klassen, Erica H Lee","doi":"10.1002/pon.70009","DOIUrl":"https://doi.org/10.1002/pon.70009","url":null,"abstract":"<p><strong>Objective: </strong>The FACE-Q Skin Cancer Module is a Patient-Reported Outcome Measure (PROM) utilized to assess outcomes following facial skin cancer resection. However, the lack of Minimal Important Difference (MID) estimates hinders the interpretability of the PROM scores. This study established MID estimates for the four outcome scales from the FACE-Q Skin Cancer Module using distribution-based methods.</p><p><strong>Methods: </strong>A prospective cohort study at four hospitals in the United States, enrolled participants who underwent Mohs Micrographic Surgery (MMS) for facial skin cancer between April 2020 and April 2022. Participants completed the Satisfaction with Facial Appearance, Appearance-related Psychosocial Distress, Cancer Worry, and Appraisal of Scars scales at four time points: pre-operatively, 2-week, 6-month, and 1-year post-surgery.</p><p><strong>Results: </strong>A total of 990 patients participated in the study, with completion rates of 98.4% for the pre-operative assessment, 70.8% at 2 weeks, 59.3% at 6 months, and 60.4% at 1 year. MID estimates, calculated using 0.2 standard deviation and 0.2 standardized response mean, were determined for the four scales. The mean MID estimates, based on a Rasch transformed score ranging from 0 to 100, were 5 for the Appraisal of Scars scale and 4 for the remaining three scales.</p><p><strong>Conclusion: </strong>This multicenter study provides valuable MID estimates for the FACE-Q Skin Cancer Module, specifically for the MMS patient population, enabling clinicians and researchers to better interpret scores, determine appropriate sample sizes, and apply the findings in clinical care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e70009"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142473276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jonathan Davidson, Michelle D Taylor, Charlie J Gilbride, Jacquelyn Romaine, Karen Tipples, Melanie E Powell, Virginia Wolstenholme, Clare Bradley
Objective: The Cancer Dependent Quality of Life (CancerDQoL) questionnaire asks about the impact of cancer and its treatment on individuals' quality of life (QoL). This study evaluates the psychometric properties of the CancerDQoL in a UK sample.
Methods: Patients (n = 159) with a range of cancers, recruited from Barts Health NHS Trust and Barts Maggie's Centre, completed self-administered questionnaires: CancerDQoL, EQ-5D-VAS (health status), EORTC-QLQ-C30 (predominantly health symptoms/functioning) and W-BQ16 (well-being). Based on the pre-existing -DQoL template and Item Library (Bradley), the CancerDQoL includes 23 cancer-specific life-domain items and four overview items.
Results: Exploratory factor analysis revealed a 22-item, single-factor solution. Internal consistency was excellent (α = 0.94). Cancer negatively impacted all life domains: 'feelings about future' had the most negative mean weighted (by importance) impact (WI) score. 'Physical abilities' WI scores were ranked 12th. CancerDQoL Average Weighted Impact (AWI) scores were more strongly correlated with the Cancer-dependent QoL overview item than with the General QoL or General Health overview items. As expected, the EQ-5D-VAS and EORTC-QLQ-C30 correlated together more strongly than with CancerDQoL AWI scores.
Conclusions: The CancerDQoL is the first individualised questionnaire measuring the impact of cancer and its treatment on QoL. The CancerDQoL AWI score is related to, but different from, measures of health status/functioning and well-being. Eleven CancerDQoL life-domains were more negatively impacted/important than physical abilities which is a major focus of the EQ-5D and EORTC-QLQ-C30. By revealing aspects of life most impacted by cancer and its treatment, efforts can be prioritised to improve QoL for people with cancer.
{"title":"Psychometric Evaluation of the Cancer Dependent Quality of Life (CancerDQoL) Questionnaire: An Individualised Measure of the Impact of Cancer and Its Treatment on Quality of Life.","authors":"Jonathan Davidson, Michelle D Taylor, Charlie J Gilbride, Jacquelyn Romaine, Karen Tipples, Melanie E Powell, Virginia Wolstenholme, Clare Bradley","doi":"10.1002/pon.70002","DOIUrl":"https://doi.org/10.1002/pon.70002","url":null,"abstract":"<p><strong>Objective: </strong>The Cancer Dependent Quality of Life (CancerDQoL) questionnaire asks about the impact of cancer and its treatment on individuals' quality of life (QoL). This study evaluates the psychometric properties of the CancerDQoL in a UK sample.</p><p><strong>Methods: </strong>Patients (n = 159) with a range of cancers, recruited from Barts Health NHS Trust and Barts Maggie's Centre, completed self-administered questionnaires: CancerDQoL, EQ-5D-VAS (health status), EORTC-QLQ-C30 (predominantly health symptoms/functioning) and W-BQ16 (well-being). Based on the pre-existing -DQoL template and Item Library (Bradley), the CancerDQoL includes 23 cancer-specific life-domain items and four overview items.</p><p><strong>Results: </strong>Exploratory factor analysis revealed a 22-item, single-factor solution. Internal consistency was excellent (α = 0.94). Cancer negatively impacted all life domains: 'feelings about future' had the most negative mean weighted (by importance) impact (WI) score. 'Physical abilities' WI scores were ranked 12th. CancerDQoL Average Weighted Impact (AWI) scores were more strongly correlated with the Cancer-dependent QoL overview item than with the General QoL or General Health overview items. As expected, the EQ-5D-VAS and EORTC-QLQ-C30 correlated together more strongly than with CancerDQoL AWI scores.</p><p><strong>Conclusions: </strong>The CancerDQoL is the first individualised questionnaire measuring the impact of cancer and its treatment on QoL. The CancerDQoL AWI score is related to, but different from, measures of health status/functioning and well-being. Eleven CancerDQoL life-domains were more negatively impacted/important than physical abilities which is a major focus of the EQ-5D and EORTC-QLQ-C30. By revealing aspects of life most impacted by cancer and its treatment, efforts can be prioritised to improve QoL for people with cancer.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e70002"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142506707","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ka Ming Chow, Janine Porter-Steele, Ka Yi Siu, Wai Man Shum, Woon Lai Lee, Kai Chow Choi, Carmen W H Chan
Objective: To evaluate the effectiveness of a sexual rehabilitation program, SEXHAB, in improving sexual functioning, reducing sexual distress, and enhancing marital satisfaction for women after gynecological cancer treatment.
Methods: This is a randomized controlled trial that included 150 women newly diagnosed with gynecological cancer from three public hospitals in Hong Kong. Participants were randomly assigned to the intervention group (n = 78) to receive the SEXHAB or to an attention control group (n = 72) to receive attention. The SEXHAB comprises four individual- or couple-based sessions with three major components: information provision, cognitive-behavioral therapy and counseling using motivational interviewing skills. The outcomes were measured at baseline (T0), upon completion of the program (T1) and 12-month post-treatment (T2). Semi-structured interviews were also conducted with the SEXHAB group participants to explore their experiences with and opinions toward the program.
Results: At both follow-ups, there were no statistically significant differences between groups in improving sexual functioning, sexual distress and marital satisfaction. Nevertheless, participants in the SEXHAB group reported their partners having significantly greater sexual interest at T1 (76% vs. 52%, rate ratio: 1.46, 95% CI: 1.07 to 1.99, p = 0.024) and T2 (74% vs. 48%, rate ratio: 1.55, 95% CI: 1.11 to 2.10, p = 0.014). From the qualitative interviews, the interviewees who resumed sexual activity reported positive experiences in rebuilding sexuality and intimacy.
Conclusions: Despite the quantitative results are negative, the qualitative findings suggest potential benefits of the SEXHAB for women resuming sexual activities after treatment for gynecological cancer. Further studies with longer intervention period and follow-ups are needed to confirm the intervention effects.
{"title":"Multicentre Randomized Controlled Trial of a Nurse-Led Sexual Rehabilitation Intervention to Rebuild Sexuality and Intimacy After Treatment for Gynecological Cancer.","authors":"Ka Ming Chow, Janine Porter-Steele, Ka Yi Siu, Wai Man Shum, Woon Lai Lee, Kai Chow Choi, Carmen W H Chan","doi":"10.1002/pon.70004","DOIUrl":"https://doi.org/10.1002/pon.70004","url":null,"abstract":"<p><strong>Objective: </strong>To evaluate the effectiveness of a sexual rehabilitation program, SEXHAB, in improving sexual functioning, reducing sexual distress, and enhancing marital satisfaction for women after gynecological cancer treatment.</p><p><strong>Methods: </strong>This is a randomized controlled trial that included 150 women newly diagnosed with gynecological cancer from three public hospitals in Hong Kong. Participants were randomly assigned to the intervention group (n = 78) to receive the SEXHAB or to an attention control group (n = 72) to receive attention. The SEXHAB comprises four individual- or couple-based sessions with three major components: information provision, cognitive-behavioral therapy and counseling using motivational interviewing skills. The outcomes were measured at baseline (T0), upon completion of the program (T1) and 12-month post-treatment (T2). Semi-structured interviews were also conducted with the SEXHAB group participants to explore their experiences with and opinions toward the program.</p><p><strong>Results: </strong>At both follow-ups, there were no statistically significant differences between groups in improving sexual functioning, sexual distress and marital satisfaction. Nevertheless, participants in the SEXHAB group reported their partners having significantly greater sexual interest at T1 (76% vs. 52%, rate ratio: 1.46, 95% CI: 1.07 to 1.99, p = 0.024) and T2 (74% vs. 48%, rate ratio: 1.55, 95% CI: 1.11 to 2.10, p = 0.014). From the qualitative interviews, the interviewees who resumed sexual activity reported positive experiences in rebuilding sexuality and intimacy.</p><p><strong>Conclusions: </strong>Despite the quantitative results are negative, the qualitative findings suggest potential benefits of the SEXHAB for women resuming sexual activities after treatment for gynecological cancer. Further studies with longer intervention period and follow-ups are needed to confirm the intervention effects.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e70004"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142473277","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Simon N Rogers, Hao-Hsuan Tsai, Mary Gemma Cherry, Joanne M Patterson, Cherith Jane Semple
Purpose: The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice.
Methods: Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual.
Results: Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes).
Conclusion: New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool.
Implications for cancer survivors: With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.
{"title":"Experiences and Needs of Carers of Patients With Head and Neck Cancer: A Systematic Review.","authors":"Simon N Rogers, Hao-Hsuan Tsai, Mary Gemma Cherry, Joanne M Patterson, Cherith Jane Semple","doi":"10.1002/pon.9308","DOIUrl":"10.1002/pon.9308","url":null,"abstract":"<p><strong>Purpose: </strong>The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice.</p><p><strong>Methods: </strong>Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual.</p><p><strong>Results: </strong>Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes).</p><p><strong>Conclusion: </strong>New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool.</p><p><strong>Implications for cancer survivors: </strong>With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 10","pages":"e9308"},"PeriodicalIF":3.3,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142352681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Poorva Pradhan, Ashleigh R. Sharman, Carsten E. Palme, Michael S. Elliott, Jonathan R. Clark, Rebecca L. Venchiarutti
ObjectiveUnderstanding survivorship issues among people with head and neck cancer (HNC) is important as survival rates increase. Most research has focused on urban patients, leaving a gap in understanding the challenges faced by those in rural areas. This study aims to summarise the literature on survivorship needs for people with HNC in rural areas.MethodsPubMed, PsycINFO, Scopus, Medline, CINAHL, Web of Science, and Embase were searched from database inception to 10 July 2024, with no restriction on publication period, country, or language. Data on study aims, country, methodology, and major findings related to HNC survivors in rural areas were extracted. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklists.ResultsTwenty‐one studies met the inclusion criteria. Eight studies were qualitative, 11 were quantitative, and two adopted a mixed‐methods approach. Results demonstrate the impact of complex treatments on physical (n = 13) and psychosocial (n = 14) functioning. This study also emphasises multifaceted challenges, including reduced access to specialised services, resulting in greater travel and financial burden, extending to caregivers. Hence, primary healthcare services are crucial in supporting these patients closer to home.ConclusionsAddressing the gaps in equitable post‐treatment care requires an even distribution of healthcare funding and workforce in rural areas. Future research could target these issues to develop tailored interventions or models of care, such as shared care, to ease access and financial burden.
{"title":"Survivorship Needs in Patients With Head and Neck Cancer in Regional, Rural and Remote Areas: A Systematic Review","authors":"Poorva Pradhan, Ashleigh R. Sharman, Carsten E. Palme, Michael S. Elliott, Jonathan R. Clark, Rebecca L. Venchiarutti","doi":"10.1002/pon.9311","DOIUrl":"https://doi.org/10.1002/pon.9311","url":null,"abstract":"ObjectiveUnderstanding survivorship issues among people with head and neck cancer (HNC) is important as survival rates increase. Most research has focused on urban patients, leaving a gap in understanding the challenges faced by those in rural areas. This study aims to summarise the literature on survivorship needs for people with HNC in rural areas.MethodsPubMed, PsycINFO, Scopus, Medline, CINAHL, Web of Science, and Embase were searched from database inception to 10 July 2024, with no restriction on publication period, country, or language. Data on study aims, country, methodology, and major findings related to HNC survivors in rural areas were extracted. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklists.ResultsTwenty‐one studies met the inclusion criteria. Eight studies were qualitative, 11 were quantitative, and two adopted a mixed‐methods approach. Results demonstrate the impact of complex treatments on physical (<jats:italic>n</jats:italic> = 13) and psychosocial (<jats:italic>n</jats:italic> = 14) functioning. This study also emphasises multifaceted challenges, including reduced access to specialised services, resulting in greater travel and financial burden, extending to caregivers. Hence, primary healthcare services are crucial in supporting these patients closer to home.ConclusionsAddressing the gaps in equitable post‐treatment care requires an even distribution of healthcare funding and workforce in rural areas. Future research could target these issues to develop tailored interventions or models of care, such as shared care, to ease access and financial burden.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"1 1","pages":""},"PeriodicalIF":3.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264808","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Devarshi Vasa, Lauren Guerra, Mita S. Goel, Yael Tobi Harris, Jenny J. Lin
ObjectiveBreast cancer survivors (BCS) have higher rates of depression which is associated with lower adherence to medications, diet, and physical activity. Managing diabetes (DM) requires adherence to several of these self‐management behaviors (SMB), and BCS have an increased risk of DM. We investigated whether depressive symptoms were associated with adherence to DM SMB in a cohort of BCS.MethodsBCS with DM were surveyed semiannually for 2 years. Depression was assessed with the Hospital Anxiety and Depression Scale (HADS). Adherence to DM medication, diet, and physical activity was self‐reported using the Medication Adherence Report Scale (MARS), Summary of Diabetes Self‐Care Activities Assessment (SDSCA), and International Physical Activity Questionnaire (IPAQ), respectively. Using generalized linear equation modeling, the association of depressive symptoms with nonadherence to SMB was assessed, adjusting for age, race, marital status, education level, and beliefs about cancer and DM risk.ResultsAmong 244 BCS with DM, those who were nonadherent to medication, diet, and/or physical activity had higher depression scores (p < 0.01). In adjusted analyses, higher depression scores were independently associated with dietary (OR = 1.16, p < 0.001) and physical activity nonadherence (OR = 1.18, p < 0.001) but not with medication nonadherence. Concerns about medications was independently associated with medication nonadherence (OR = 1.17, p = 0.024).ConclusionsHigher depression scores are associated with nonadherence to DM SMB in this cohort of BCS. These findings highlight the importance of addressing depressive symptoms in BCS to help improve adherence to DM medications, diet, and physical activity.
{"title":"The Impact of Depression on Adherence to Diabetes Self‐Management Behaviors in Breast Cancer Survivors","authors":"Devarshi Vasa, Lauren Guerra, Mita S. Goel, Yael Tobi Harris, Jenny J. Lin","doi":"10.1002/pon.9309","DOIUrl":"https://doi.org/10.1002/pon.9309","url":null,"abstract":"ObjectiveBreast cancer survivors (BCS) have higher rates of depression which is associated with lower adherence to medications, diet, and physical activity. Managing diabetes (DM) requires adherence to several of these self‐management behaviors (SMB), and BCS have an increased risk of DM. We investigated whether depressive symptoms were associated with adherence to DM SMB in a cohort of BCS.MethodsBCS with DM were surveyed semiannually for 2 years. Depression was assessed with the Hospital Anxiety and Depression Scale (HADS). Adherence to DM medication, diet, and physical activity was self‐reported using the Medication Adherence Report Scale (MARS), Summary of Diabetes Self‐Care Activities Assessment (SDSCA), and International Physical Activity Questionnaire (IPAQ), respectively. Using generalized linear equation modeling, the association of depressive symptoms with nonadherence to SMB was assessed, adjusting for age, race, marital status, education level, and beliefs about cancer and DM risk.ResultsAmong 244 BCS with DM, those who were nonadherent to medication, diet, and/or physical activity had higher depression scores (<jats:italic>p</jats:italic> < 0.01). In adjusted analyses, higher depression scores were independently associated with dietary (OR = 1.16, <jats:italic>p</jats:italic> < 0.001) and physical activity nonadherence (OR = 1.18, <jats:italic>p</jats:italic> < 0.001) but not with medication nonadherence. Concerns about medications was independently associated with medication nonadherence (OR = 1.17, <jats:italic>p</jats:italic> = 0.024).ConclusionsHigher depression scores are associated with nonadherence to DM SMB in this cohort of BCS. These findings highlight the importance of addressing depressive symptoms in BCS to help improve adherence to DM medications, diet, and physical activity.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"32 1","pages":""},"PeriodicalIF":3.6,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264810","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Martina Breuning, Sophia Mählmann, Hedy Kerek‐Bodden, Susanne Oettlin, Joachim Weis
ObjectiveThe aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult‐child caregivers and (2) identify support needs of family caregivers regarding peer support programs.MethodsSemi‐structured interviews (n = 30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes.ResultsTen categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult‐child caregivers accentuated the emotional burden. All caregivers wished for peer‐to‐peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found.ConclusionsPartner, parent and adult‐child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.
{"title":"Family Caregivers of Cancer Patients: Burdens and Support Preferences of Partner, Parent and Adult‐Child Caregivers","authors":"Martina Breuning, Sophia Mählmann, Hedy Kerek‐Bodden, Susanne Oettlin, Joachim Weis","doi":"10.1002/pon.9310","DOIUrl":"https://doi.org/10.1002/pon.9310","url":null,"abstract":"ObjectiveThe aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult‐child caregivers and (2) identify support needs of family caregivers regarding peer support programs.MethodsSemi‐structured interviews (<jats:italic>n</jats:italic> = 30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes.ResultsTen categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult‐child caregivers accentuated the emotional burden. All caregivers wished for peer‐to‐peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found.ConclusionsPartner, parent and adult‐child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"7 1","pages":"e9310"},"PeriodicalIF":3.6,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142186150","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}