Pub Date : 2024-06-01Epub Date: 2024-03-06DOI: 10.1089/jayao.2023.0138
Anna Zeidman, Alexandra M Davis, Jennifer S Ford, Michael Diefenbach, Catherine Benedict
This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (n = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (β = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (β = 0.26, p = 0.03), and understanding of one's reproductive health (β = -0.22, p = 0.03) correlated with reproductive distress, controlling for covariates (F(10, 88) = 3.50, p < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.
{"title":"Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors.","authors":"Anna Zeidman, Alexandra M Davis, Jennifer S Ford, Michael Diefenbach, Catherine Benedict","doi":"10.1089/jayao.2023.0138","DOIUrl":"10.1089/jayao.2023.0138","url":null,"abstract":"<p><p>This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (<i>n</i> = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (<i>β</i> = -0.20, <i>p</i> = 0.04), perceived consequences of cancer-related fertility changes (<i>β</i> = 0.26, <i>p</i> = 0.03), and understanding of one's reproductive health (<i>β</i> = -0.22, <i>p</i> = 0.03) correlated with reproductive distress, controlling for covariates (<i>F</i>(10, 88) = 3.50, <i>p</i> < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11296315/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140059392","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2023-11-29DOI: 10.1089/jayao.2023.0114
Meredith K Reffner Collins
{"title":"Reel Resilience: Unveiling the Potential Role of Entertainment Media Narratives in Improving Psychological Well-Being Among Adolescent and Young Adult Cancer Survivors.","authors":"Meredith K Reffner Collins","doi":"10.1089/jayao.2023.0114","DOIUrl":"10.1089/jayao.2023.0114","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138451541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2024-01-30DOI: 10.1089/jayao.2023.0135
Mariah L Wright-Nadkarni, Leena Nahata, Anthony N Audino
{"title":"Medical Trainee Education and Advocacy Regarding Sexual Health and Oncofertility: Gaps and Opportunities.","authors":"Mariah L Wright-Nadkarni, Leena Nahata, Anthony N Audino","doi":"10.1089/jayao.2023.0135","DOIUrl":"10.1089/jayao.2023.0135","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139575900","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2024-04-02DOI: 10.1089/jayao.2023.0145
Kexin Sun, Nhu Thao Dinh, Jeremy Lewin, Luke Grzeskowiak, Chiara Mariano, Eliza Bailey, Smaro Lazarakis, Safeera Y Hussainy
Background: Despite being considered a key component of quality-of-life, sexual health concerns in adolescents and young adults (AYA) patients with cancer (aged 15-39 years old) are often unmet due to barriers from both patients and health care professionals (HCPs). Investigation into policy and practice tools in this scope of practice is also limited. Aim: To review the literature on policy and practice tools in AYA oncosexology. Method: A scoping review was conducted using four databases: Medline, EMCARE, EMBASE, and PsycINFO, based on the Joanna Briggs Institute Scoping Review methodology. Retrieved articles were extracted into Covidence, followed by two screening rounds. Descriptive and basic content analyses were performed for evidence synthesis. Results: Seventy-four articles were included after screening rounds and citation searches. Overall, oncosexology policy and practice tools were categorized into screening tools (11 articles), guidelines (38 articles), training programs (15 articles), service delivery initiatives (5 articles), and the evaluation of their feasibility/challenges to implementation (5 articles). Among these, only ten articles were specifically about the AYA population. They helped identify and resolve sexual health concerns in AYA patients with cancer by providing strategies to overcome communication barriers, treatment options, and information resources for patients, and by advocating for more HCP education on this topic. Conclusion: The results warrant the need for more research, implementation and expansion of policy and practice tools for sexual health issues in AYA patients with cancer.
{"title":"A Scoping Review of Oncosexology Policy and Practice Tools Focused on Adolescents and Young Adults.","authors":"Kexin Sun, Nhu Thao Dinh, Jeremy Lewin, Luke Grzeskowiak, Chiara Mariano, Eliza Bailey, Smaro Lazarakis, Safeera Y Hussainy","doi":"10.1089/jayao.2023.0145","DOIUrl":"10.1089/jayao.2023.0145","url":null,"abstract":"<p><p><b><i>Background:</i></b> Despite being considered a key component of quality-of-life, sexual health concerns in adolescents and young adults (AYA) patients with cancer (aged 15-39 years old) are often unmet due to barriers from both patients and health care professionals (HCPs). Investigation into policy and practice tools in this scope of practice is also limited. <b><i>Aim:</i></b> To review the literature on policy and practice tools in AYA oncosexology. <b><i>Method:</i></b> A scoping review was conducted using four databases: <i>Medline, EMCARE, EMBASE</i>, <i>and PsycINFO</i>, based on the Joanna Briggs Institute Scoping Review methodology. Retrieved articles were extracted into Covidence, followed by two screening rounds. Descriptive and basic content analyses were performed for evidence synthesis. <b><i>Results:</i></b> Seventy-four articles were included after screening rounds and citation searches. Overall, oncosexology policy and practice tools were categorized into screening tools (11 articles), guidelines (38 articles), training programs (15 articles), service delivery initiatives (5 articles), and the evaluation of their feasibility/challenges to implementation (5 articles). Among these, only ten articles were specifically about the AYA population. They helped identify and resolve sexual health concerns in AYA patients with cancer by providing strategies to overcome communication barriers, treatment options, and information resources for patients, and by advocating for more HCP education on this topic. <b><i>Conclusion:</i></b> The results warrant the need for more research, implementation and expansion of policy and practice tools for sexual health issues in AYA patients with cancer.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140335740","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2024-01-24DOI: 10.1089/jayao.2023.0111
Kayla L Foster, Danielle J Lee, Selma F Witchel, Catherine M Gordon
Premature ovarian insufficiency (POI) is one of many potential long-term consequences of childhood cancer treatment in females. Causes of POI in this patient population can include chemotherapy, especially alkylating agents, and radiation therapy. Rarely, ovarian tumors lead to ovarian dysfunction. POI can manifest as delayed pubertal development, irregular menses or amenorrhea, and infertility. This diagnosis often negatively impacts emotional health due to the implications of impaired ovarian function after already enduring treatment for a primary malignancy. The emerging adult may be challenged by the impact on energy level, quality of life, and fertility potential. POI can also lead to low bone density and compromised skeletal strength. This review discusses the health consequences of POI in childhood cancer survivors (CCS). We also explore the role of fertility preservation for CCS, including ovarian tissue cryopreservation and other available options. Lastly, knowledge gaps are identified that will drive a future research agenda.
{"title":"Ovarian Insufficiency and Fertility Preservation During and After Childhood Cancer Treatment.","authors":"Kayla L Foster, Danielle J Lee, Selma F Witchel, Catherine M Gordon","doi":"10.1089/jayao.2023.0111","DOIUrl":"10.1089/jayao.2023.0111","url":null,"abstract":"<p><p>Premature ovarian insufficiency (POI) is one of many potential long-term consequences of childhood cancer treatment in females. Causes of POI in this patient population can include chemotherapy, especially alkylating agents, and radiation therapy. Rarely, ovarian tumors lead to ovarian dysfunction. POI can manifest as delayed pubertal development, irregular menses or amenorrhea, and infertility. This diagnosis often negatively impacts emotional health due to the implications of impaired ovarian function after already enduring treatment for a primary malignancy. The emerging adult may be challenged by the impact on energy level, quality of life, and fertility potential. POI can also lead to low bone density and compromised skeletal strength. This review discusses the health consequences of POI in childhood cancer survivors (CCS). We also explore the role of fertility preservation for CCS, including ovarian tissue cryopreservation and other available options. Lastly, knowledge gaps are identified that will drive a future research agenda.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139542392","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: This study's aim was to determine the actual status of transitional care for patients with pediatric cancer (PPCs) in Japan by surveying obstetricians/gynecologists. Methods: A questionnaire survey on transitional medicine was conducted in the form of an online questionnaire at 579 major training facilities nationwide, which were registered with the Japanese Society of Obstetrics and Gynecology. Results: While 40% of the facilities had received referrals for PPCs, only 13% provided transitional care specifically for PPCs. The most common problems with referrals were related to "insufficient explanation." In addition, at facilities with no experience treating PPCs, many respondents commented that they did not know how to follow the progression of the disease. Regarding the necessity of obstetrics/gynecology visits for PPCs, more than half of the respondents at facilities with experience treating PPCs answered that such visits were "necessary"; only 1% answered that they were "unnecessary." On the other hand, 37% of the facilities that had no experience treating PPCs answered that it was "necessary," whereas 4% answered that it was "unnecessary." Conclusions: This survey of the actual status of transitional care between pediatrics and obstetrics/gynecology in Japan identified issues to be addressed for the spread of transitional care. The results suggest that, in the future, health care professionals need education to increase their knowledge, and that patient education that leads to patients' awareness of their own self-management is necessary.
{"title":"Survey of Transitional Care Between Pediatrics and Obstetrics/Gynecology in Japan.","authors":"Kentaro Nakamura, Yukayo Terashita, Atsushi Manabe, Nao Suzuki","doi":"10.1089/jayao.2023.0017","DOIUrl":"10.1089/jayao.2023.0017","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> This study's aim was to determine the actual status of transitional care for patients with pediatric cancer (PPCs) in Japan by surveying obstetricians/gynecologists. <b><i>Methods:</i></b> A questionnaire survey on transitional medicine was conducted in the form of an online questionnaire at 579 major training facilities nationwide, which were registered with the Japanese Society of Obstetrics and Gynecology. <b><i>Results:</i></b> While 40% of the facilities had received referrals for PPCs, only 13% provided transitional care specifically for PPCs. The most common problems with referrals were related to \"insufficient explanation.\" In addition, at facilities with no experience treating PPCs, many respondents commented that they did not know how to follow the progression of the disease. Regarding the necessity of obstetrics/gynecology visits for PPCs, more than half of the respondents at facilities with experience treating PPCs answered that such visits were \"necessary\"; only 1% answered that they were \"unnecessary.\" On the other hand, 37% of the facilities that had no experience treating PPCs answered that it was \"necessary,\" whereas 4% answered that it was \"unnecessary.\" <b><i>Conclusions:</i></b> This survey of the actual status of transitional care between pediatrics and obstetrics/gynecology in Japan identified issues to be addressed for the spread of transitional care. The results suggest that, in the future, health care professionals need education to increase their knowledge, and that patient education that leads to patients' awareness of their own self-management is necessary.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139990121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Paul R D'Alessandro, Meghan E McGrady, Jason M Nagata, Robin E Norris, Joseph G Pressey
This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.
{"title":"Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis.","authors":"Paul R D'Alessandro, Meghan E McGrady, Jason M Nagata, Robin E Norris, Joseph G Pressey","doi":"10.1089/jayao.2024.0024","DOIUrl":"https://doi.org/10.1089/jayao.2024.0024","url":null,"abstract":"<p><p>This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141160322","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: Cancer awareness can help reduce the associated morbidity and mortality. There is no scale for the assessment of general cancer awareness in Turkiye. This study aimed to evaluate the cultural relevance and psychometric properties of the cancer awareness measure (CAM) for use in adolescents in the Turkish population. Methods: This methodological study included 400 students attending seven high schools in western Turkiye, recruited by convenience sampling. The CAM was translated into Turkish and assessed for content validity by expert panel opinion and content validity index (CVI). The Turkish CAM was administered online, and its reliability was assessed using Cronbach's alpha coefficients, item-total and item-subscale correlation coefficients, and test-retest analysis. Results: The Turkish CAM had excellent content validity (scale CVI = 0.99). Cronbach's alpha for the entire scale was 0.72, and item-subscale correlation coefficients were 0.33-.75 (p < 0.001). Test-retest reliability was good, with an intraclass correlation coefficient of 0.83 for the entire scale (p < 0.001). The students' mean score on the Turkish CAM was 45.60 ± 7.23 (on a scale of 11-77), indicating moderate cancer awareness. Conclusion: The Turkish CAM is a valid and reliable measure that can be used to assess cancer awareness in adolescents in Turkiye. Interventional studies should be performed to measure and increase cancer awareness and promote cancer prevention among young people.
{"title":"Evaluation of the Cancer Awareness Measure in Adolescents in Turkiye: A Methodological Study.","authors":"Şeyma Zeybek, Şeyda Özbiçakçi","doi":"10.1089/jayao.2024.0005","DOIUrl":"https://doi.org/10.1089/jayao.2024.0005","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Cancer awareness can help reduce the associated morbidity and mortality. There is no scale for the assessment of general cancer awareness in Turkiye. This study aimed to evaluate the cultural relevance and psychometric properties of the cancer awareness measure (CAM) for use in adolescents in the Turkish population. <b><i>Methods:</i></b> This methodological study included 400 students attending seven high schools in western Turkiye, recruited by convenience sampling. The CAM was translated into Turkish and assessed for content validity by expert panel opinion and content validity index (CVI). The Turkish CAM was administered online, and its reliability was assessed using Cronbach's alpha coefficients, item-total and item-subscale correlation coefficients, and test-retest analysis. <b><i>Results:</i></b> The Turkish CAM had excellent content validity (scale CVI = 0.99). Cronbach's alpha for the entire scale was 0.72, and item-subscale correlation coefficients were 0.33-.75 (<i>p</i> < 0.001). Test-retest reliability was good, with an intraclass correlation coefficient of 0.83 for the entire scale (<i>p</i> < 0.001). The students' mean score on the Turkish CAM was 45.60 ± 7.23 (on a scale of 11-77), indicating moderate cancer awareness. <b><i>Conclusion:</i></b> The Turkish CAM is a valid and reliable measure that can be used to assess cancer awareness in adolescents in Turkiye. Interventional studies should be performed to measure and increase cancer awareness and promote cancer prevention among young people.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Allison C Grimes, Aaron J Sugalski, Michelle M Nuño, Subhash Ramakrishnan, Melissa P Beauchemin, Paula D Robinson, Nancy Santesso, Alexandra M Walsh, Andrea R Wrightson, Lolie C Yu, Susan K Parsons, Lillian Sung, L Lee Dupuis
Background: The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. Methods: This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. Results: A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. Conclusions: Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.
{"title":"Clinical Practice Guideline-Inconsistent Management of Fertility Preservation in Pediatric Cancer Patients in Community Settings: A Children's Oncology Group Study.","authors":"Allison C Grimes, Aaron J Sugalski, Michelle M Nuño, Subhash Ramakrishnan, Melissa P Beauchemin, Paula D Robinson, Nancy Santesso, Alexandra M Walsh, Andrea R Wrightson, Lolie C Yu, Susan K Parsons, Lillian Sung, L Lee Dupuis","doi":"10.1089/jayao.2024.0022","DOIUrl":"10.1089/jayao.2024.0022","url":null,"abstract":"<p><p><b><i>Background:</i></b> The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. <b><i>Methods:</i></b> This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. <b><i>Results:</i></b> A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. <b><i>Conclusions:</i></b> Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070577","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer
Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. Results: The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to "the life before." The primary needs were social and psychological support, connecting with peers, orientation, and guidance. Conclusion: AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.
{"title":"\"The Most Important Thing is That You Are Not Left Alone\"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer.","authors":"Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer","doi":"10.1089/jayao.2023.0158","DOIUrl":"https://doi.org/10.1089/jayao.2023.0158","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. <b><i>Methods:</i></b> We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. <b><i>Results:</i></b> The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to \"the life before.\" The primary needs were social and psychological support, connecting with peers, orientation, and guidance. <b><i>Conclusion:</i></b> AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. <b><i>Trial Registration Number:</i></b> DRKS00030277 (German Clinical Trials Register); September 27, 2022.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070485","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}