Journal of Cancer Survivorship最新文献

{"title":"Experiences of unemployed and/or work-disabled cancer survivors who have pursued to return to paid employment: a focus group study.","authors":"M A Greidanus, F van Ommen, A G E M de Boer, P Coenen, S F A Duijts","doi":"10.1007/s11764-024-01657-5","DOIUrl":"https://doi.org/10.1007/s11764-024-01657-5","url":null,"abstract":"<p><strong>Purpose: </strong>To explore experiences of unemployed and/or work-disabled cancer survivors who have pursued to return to paid employment.</p><p><strong>Methods: </strong>Four digital focus group interviews were conducted with 16 cancer survivors (< 10 years post-diagnosis) who have pursued to return to work within the last 2 years. Interview topics included motivations, facilitators of and barriers to job seeking, and returning to and maintaining paid employment. Interview audio recordings were transcribed verbatim and analyzed using conventional content analyses.</p><p><strong>Results: </strong>Participants were mostly female (94%), and the majority had successfully returned to paid employment (56%). Both intrinsic factors (e.g., sense of purpose, social interactions) and extrinsic factors (e.g., financial necessity) motivated their return to paid employment. During job seeking, participants experienced facilitators including support, personal qualities (e.g., life experience), and trial workplaces. Barriers included inadequate support, perceived employer discrimination, and work ability uncertainty. Returning to and maintaining employment was facilitated by flexible work, supportive colleagues, and intrinsic drive, while barriers included side effects (e.g., fatigue) and overly demanding work.</p><p><strong>Conclusions: </strong>Unemployed and/or work-disabled cancer survivors are generally motivated to return to paid employment by both intrinsic and extrinsic factors, but uncertainty about their ability and inadequate support may hinder this. These findings highlight the need for trial workplaces, support during every phase of return to paid employment, and a flexible, supportive workplace.</p><p><strong>Implications for cancer survivors: </strong>Tailored interventions addressing the needs identified in this study are urgently needed. The recommendations provided offer strategies for various stakeholders to enhance support for unemployed and work-disabled cancer survivors.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141975761","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation of fracture risk assessment in men with prostate cancer requiring long-term androgen deprivation therapy: a systematic scoping review using the i-PARIHS implementation framework.","authors":"Qizhi Huang, Caroline Mitchell, Elisavet Theodoulou, Andrew C K Lee, Janet Brown","doi":"10.1007/s11764-024-01659-3","DOIUrl":"https://doi.org/10.1007/s11764-024-01659-3","url":null,"abstract":"<p><strong>Purpose: </strong>Androgen deprivation therapy (ADT) is a mainstay of treatment for prostate cancer (PCa) and is associated with increased risks of osteoporosis and fragility fractures. Despite international guidelines to mitigate fracture risk, osteoporosis is under-diagnosed and under-treated due to poor implementation. This scoping review aims to synthesise knowledge surrounding the implementation of guidelines to inform health service interventions to reduce fracture risk in men with PCa-taking ADT (PCa-ADT).</p><p><strong>Method: </strong>Four databases and additional literature were searched for studies published between January 2000 and January 2023. Studies that provided evidence influencing guidelines implementation were included. The i-PARIHS (Promoting Action on Research Implementation in Health Services) implementation framework was used to inform the narrative synthesis.</p><p><strong>Results: </strong>Of the 1229 studies identified, 9 studies met the inclusion criteria. Overall, an improvement in fracture risk assessment was observed across heterogeneous study designs and outcome measures. Six studies were from Canada. Two studies involved family physicians or a community healthcare programme. Two studies incorporated patient or specialist surveys. One utilised an implementation framework. Implementation barriers included the lack of knowledge for both patients and clinicians, time constraints, unsupportive organisational structures, and challenges in transferring patient care from specialists to primary care. Effective strategies included education, novel care pathways using a multidisciplinary approach, incorporating a healthy bone prescription tool into routine care, point-of-care interventions, and bespoke clinics.</p><p><strong>Conclusion: </strong>There is an unmet need to provide evidence-based bone healthcare in men with PCa receiving ADT. This study highlights barriers and strategies in the implementation of fracture risk assessment for PCa-ADT patients.</p><p><strong>Implications for cancer survivors: </strong>Primary care clinicians can play a significant role in the management of complications from long-term cancer treatment such as treatment-induced bone loss. Future studies should consult patients, families, specialists, and primary care clinicians in service re-design.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141975762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychological impact of exceptional response in people with advanced cancer: a qualitative exploration.","authors":"Sakeenah Wahab, Anthony Joshua, Haryana M Dhillon, Megan Barnet","doi":"10.1007/s11764-024-01655-7","DOIUrl":"https://doi.org/10.1007/s11764-024-01655-7","url":null,"abstract":"<p><strong>Background: </strong>In the cancer context, exceptional response incorporates unusual or unexpected response to anti-cancer treatment. For this study, exceptionally 'good' responses are defined as progression-free survival of more than three times the median from comparable trials. We aimed to explore how people meeting the definition of exceptional response to systemic cancer treatment experience adjust to their unexpected survivorship.</p><p><strong>Methods: </strong>Individuals with 'exceptional response' to anti-cancer therapy nationally were referred by their treating clinicians to the Exceptional Responders Program. We conducted a qualitative sub-study involving semi-structured interviews with purposively selected participants. Those eligible had metastatic cancer, had survived at least 3 times the expected time since diagnosis, spoke English, and were aged > 18 years. Interviews were audiorecorded, transcribed and analysed thematically; and continued until thematic saturation was achieved.</p><p><strong>Results: </strong>Twenty participants were interviewed. Thirteen were male (65%) with a median age of 63 years. Median time since cancer diagnosis was 6.5 years (range 3-18); survival times ranged between 3 and 10 times that expected. We identified four themes which varied in importance between individuals and over time.</p><p><strong>Conclusion: </strong>Exceptional responders may benefit from routine screening of distress and unmet needs to provide psychosocial support. Clinical services must focus on first capturing and then tailoring care to meet the diverse needs of this growing cohort.</p><p><strong>Implications for cancer survivors: </strong>Adjustment to a diagnosis of advanced cancer and subsequent unexpected long-term survival is an often isolating experience and is common amongst exceptional responders. Seeking psychological and social support may assist with adjustment.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141975763","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Uncovering the symptom relationship among sleep quality, anxiety, and depression in Chinese patients with breast cancer: multidimensional data validation using PSQI versus actigraphy.","authors":"Yining Tao, Qixi Liu, Xinxin Ye, Jie Feng, Huanju Liu, Jinqing Wu, Jing Zhang, Qian Lin, Jingzhan Lu, Renyang Liu","doi":"10.1007/s11764-024-01649-5","DOIUrl":"https://doi.org/10.1007/s11764-024-01649-5","url":null,"abstract":"<p><strong>Purpose: </strong>The interplay between sleep quality, anxiety, and depression among breast cancer patients remains poorly understood. This study aimed to investigate and compare the symptoms relationships among these three factors in Chinese breast cancer patients, utilizing two sleep assessments.</p><p><strong>Methods: </strong>Our study encompassed 288 participants diagnosed with breast cancer, from whom we collected demographic information through questionnaires. Sleep quality symptoms were assessed using the Pittsburgh Sleep Quality Index (PSQI) and wrist actigraphy, while anxiety and depression symptoms were measured using the Hospital Anxiety and Depression Scale (HADS). Network analyses were conducted using R to calculate the centrality (strength) and further identify central symptoms and bridge symptoms in two networks that differed by sleep assessments. Central symptoms are closely related to other symptoms, whereas bridge symptoms indicate that symptoms may increase spread risk between different conditions.</p><p><strong>Results: </strong>In the network using PSQI data, \"I have lost interest in my appearance\" had the highest strength centrality (r_s = 2.417), followed by \"sleep duration\" (r_s = 1.068) and \"sleep efficiency\" (r_s = 0.955). In the network using wrist actigraphy data, \"wake after sleep onset\" had the highest strength value (r_s = 2.437), followed by \"sleep efficiency\" (r_s = 2.397) and \"sleep latency\" (r_s = 1.506). Two bridge symptoms were identified: \"I feel cheerful\" and \"I look forward with enjoyment to things\" in both networks.</p><p><strong>Conclusions: </strong>Depressive symptoms played a leading role in the sleep-anxiety-depression network, underscoring the need for targeted intervention tailored to survivors' specific needs.</p><p><strong>Implications for cancer survivors: </strong>Health workers can give priority to symptom-specific screening and therapies, incorporating psychological support into standard cancer care.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141975764","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sociodemographic and clinical characteristics associated with rehabilitation services utilization in older women with early-stage breast cancer from SEER-Medicare 2009-2018.","authors":"Jessica S Gorzelitz, Rachelle Brick, Luqin Deng, Michelle Mollica, Nicole Stout, Stefanie Stoller, Courtney P Williams","doi":"10.1007/s11764-024-01651-x","DOIUrl":"10.1007/s11764-024-01651-x","url":null,"abstract":"<p><strong>Purpose: </strong>Rehabilitation services are recommended by clinical practice guidelines following breast cancer treatment, yet little is known about how utilization may vary by patient-level characteristics which we aimed to study using SEER-Medicare data.</p><p><strong>Methods: </strong>Data from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database was used to identify non-metastatic breast cancer survivors aged ≥ 66 years diagnosed between 2011 and 2016. Rehabilitation services delivered 0-11 months post-diagnosis were identified via outpatient or physician visit claims. Descriptive statistics and associations between patient characteristics and rehabilitation services were calculated using modified Poisson models estimating relative risk (RR) and corresponding 95% confidence intervals (CIs).</p><p><strong>Results: </strong>Of 55,539 breast cancer survivors, 33% (n = 18,244) had received any type of rehabilitative services. Survivors were a mean age of 75 years (SD 6.7), 88% White, 86% urban-dwelling, and 21% Medicare/Medicaid dually enrolled. In adjusted models, patients aged > 75 vs. ≤ 75 were 6% (RR 0.94, 95% CI 0.92-0.96) less likely to have received rehabilitative services. Survivors in an area with greater educational attainment vs. less educational attainment, White vs. non-White, or living in a rural vs. urban area were 26% (1.26, CI 1.22-1.30), 6% (1.06, CI 1.02-1.11), and 6% (1.06, CI 1.02-1.10) more likely to have received rehabilitative services, respectively.</p><p><strong>Conclusion: </strong>The largest differences in rehabilitation utilization were observed for survivors of differing educational and treatment statuses.</p><p><strong>Implications for cancer survivors: </strong>Further research is needed on barriers, access, and delivery of rehabilitation services, specifically for breast cancer survivors who are older-aged, non-White, or Medicare/Medicaid dual eligible.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141901917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Characteristics of childhood cancer survivors attending a specialized survivorship clinic in the Deep South.","authors":"Anna L Hoppmann, Chen Dai, Lindsey Hageman, Liton Francisco, Jada Knight, Angela Mast, Kimberly Whelan, Smita Bhatia, Wendy Landier","doi":"10.1007/s11764-024-01636-w","DOIUrl":"https://doi.org/10.1007/s11764-024-01636-w","url":null,"abstract":"<p><strong>Purpose: </strong>Childhood cancer survivors carry a high burden of late-occurring treatment-related morbidity. Long-term risk-based anticipatory surveillance allows for early detection and management of complications. We sought to examine demographic, clinical, and social characteristics associated with survivorship clinic attendance at the Taking on Life after Cancer (TLC) Clinic at the Children's Hospital of Alabama.</p><p><strong>Methods: </strong>The cohort included 1122 TLC-eligible patients diagnosed with cancer between 2000 and 2016. The outcome of interest was ≥1 TLC visit. Univariable logistic regression modeling assessed cancer type, treatment era, age, sex, race/ethnicity, payer type, rural/urban residency, and distance from clinic. Significant variables (P<0.1) were retained in multivariable modeling.</p><p><strong>Results: </strong>The median age at diagnosis was 7 years old (0-19); 47% were female, 69% non-Hispanic White, 25% African American; 45% leukemia or lymphoma, 53% solid or CNS tumor, 3% other. We found that among 1122 survivors eligible to attend a survivorship clinic in the Deep South, only 52% attended. Odds of attendance were lower among survivors diagnosed at an older age, those with cancers other than leukemia/lymphoma, those lacking private insurance, and those living farther from the clinic. Race/ethnicity and rurality were not associated with clinic attendance.</p><p><strong>Conclusion: </strong>Just over half of eligible survivors attended survivorship clinic. Factors associated with non-attendance can be used to guide development of intervention strategies to ensure that childhood cancer survivors receive optimal long-term follow-up care.</p><p><strong>Implications for cancer survivors: </strong>Measures of healthcare access (insurance status and distance to care) were identified as potential intervention targets to improve uptake of survivorship care.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141897537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Lesbian and bisexual breast cancer survivors' post-treatment resource needs.","authors":"Bethany Rhoten, Jennifer M Jabson Tree, Kurt David, Uli Boehmer, Nfn Scout","doi":"10.1007/s11764-024-01650-y","DOIUrl":"https://doi.org/10.1007/s11764-024-01650-y","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of our study was to identify and describe determinants of lesbian and bisexual breast cancer survivors' post-treatment resources.</p><p><strong>Methods: </strong>We used a cross-sectional descriptive study design. The data reported here were gathered as part of OUT: The National Cancer Survey, administered electronically from September 2020 to March 2021 via social media and community partners. We used descriptive statistics, Fisher's exact tests, and thematic analysis to analyze survivor perceptions of information availability, treatment environment, care plans, social support, and health.</p><p><strong>Results: </strong>Of those who participated in the survey, (N =430) 366 identified as lesbian, and 64 identified as bisexual. Mean age was 58.6 years (range 21 - 91 years). Fewer than 11% of our sample indicated they could find helpful information about being a queer person with cancer during their treatment. Over 75% of our sample that received a cancer survivorship care plan indicated that their plan did not include resources for queer individuals.</p><p><strong>Conclusions: </strong>Affirming cancer treatment environments and resources tailored to the needs of lesbian and bisexual breast cancer survivors are critical for reducing disparities.</p><p><strong>Implications for cancer survivors: </strong>Survivorship care plans should include resources for queer individuals as a part of holistic cancer care.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141889304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Physical activity maintenance in colorectal cancer survivors after an exercise intervention applying behaviour change techniques: a systematic review and meta-analysis.","authors":"Saioa Agirre-Elordui, Julen Fernández-Landa, Jurgi Olasagasti-Ibargoien, Arkaitz Castañeda-Babarro","doi":"10.1007/s11764-024-01654-8","DOIUrl":"https://doi.org/10.1007/s11764-024-01654-8","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this systematic review and meta-analysis is to determine the long-term effect of combined physical activity (PA) and behaviour change techniques (BCT) interventions in PA maintenance of colorectal cancer survivors (CRCS) and identify the most frequent BCT implemented in them.</p><p><strong>Methods: </strong>PRISMA recommendations were followed. Databases were searched for randomized controlled trials up to October 2023. Studies in which CRCS completed a PA intervention based on any Theoretical Model of Behaviour Change (TMBC) and a subsequent follow-up period were included. Between-group differences at baseline and after follow-up were pooled for meta-analysis. BCT codification was performed using the BCT taxonomy v1. Methodological quality and evidence certainty were also assessed.</p><p><strong>Results: </strong>Five studies involving 906 CRCS met the inclusion criteria. PA interventions applying BCT showed a significant change with a small positive effect (pooled SMD = 0.22 (0.09, 0.35)) on the PA after a follow-up period between 3 and 12 months. Twenty-two different BCTs were identified (mean 17.2, range 15-19) of which 12 were common across all interventions.</p><p><strong>Conclusions: </strong>PA and BCT interventions have been found to be effective in improving the long-term maintenance of PA in CRCS. Further studies with higher methodological quality are needed to confirm these findings.</p><p><strong>Implications for cancer survivors: </strong>Aerobic exercise, pedometers, PA diaries and educational materials seem to be important aspects to achieve sustainable adherence to an active lifestyle over time. Supervision, access to fitness areas and applying some BCT appear to be differentiating features to obtain more successful PA maintenance.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141889305","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Eight-year follow-up of patient-reported outcomes in patients with breast cancer participating in exercise studies during chemotherapy.","authors":"David Binyam, Willeke R Naaktgeboren, Wim G Groen, Neil K Aaronson, Anouk E Hiensch, Wim H van Harten, Martijn M Stuiver, Anne M May","doi":"10.1007/s11764-024-01640-0","DOIUrl":"https://doi.org/10.1007/s11764-024-01640-0","url":null,"abstract":"<p><strong>Purpose: </strong>Numerous randomized controlled trials (RCTs) have shown beneficial exercise effects on fatigue, anxiety and depression and health-related quality of life (HRQoL) in breast cancer (BC) patients during and shortly after treatment. Here, we investigated the long-term effects of exercise during chemotherapy for BC on these outcomes.</p><p><strong>Methods: </strong>We invited participants of two highly comparable RCTs that investigated the effects of exercise (EX) (versus usual care (UC)) during chemotherapy in patients with non-metastatic BC (N = 357) to participate in an 8-year follow-up. In both trials, fatigue, anxiety and depression and HRQoL were assessed using the same questionnaires, at multiple timepoints. Linear mixed-effect models were used to compare study arms over time.</p><p><strong>Results: </strong>In total, 156 participants (EX = 82; UC = 74) completed the follow-up questionnaires. EX reported comparable general (between-group difference 0.73, 95% confidence interval (- 0.35; 1.80), ES = 0.18) and physical fatigue (0.55 (- 0.55; 1.65), ES = 0.13), small but statistically significantly higher levels of anxiety (1.24 (0.47 to 2.00), ES = 0.39) and depression (1.10 (0.34; 1.85), ES = 0.38), significantly lower global HRQoL (- 5.99 (- 10.65; - 1.32), ES = 0.34) and comparable summary HRQoL (- 1.90 (- 4.70; 0.89), ES = 0.16) compared to UC.</p><p><strong>Conclusion: </strong>No long-term beneficial effects of exercise during chemotherapy on BC patients' fatigue, anxiety, depression or HRQoL were observed. The less favourable outcomes for mood and HRQoL that were observed 8 years after participation in an exercise intervention may be explained by selective loss-to-follow-up.</p><p><strong>Implications for cancer survivors: </strong>The results highlight the need to incorporate strategies that promote physical activity maintenance after participation in an exercise programme to also counteract long-term detrimental side effects of cancer treatment.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.","authors":"Sienna Ruiz, Rachel Mintz, Amela Sijecic, Michelle Eggers, Aubri S Hoffman, Terri Woodard, Kari L Bjornard, Holly Hoefgen, Taryn Sandheinrich, Kenan Omurtag, Ashley J Housten","doi":"10.1007/s11764-023-01386-1","DOIUrl":"10.1007/s11764-023-01386-1","url":null,"abstract":"<p><strong>Purpose: </strong>Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement.</p><p><strong>Methods: </strong>We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics.</p><p><strong>Results: </strong>The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics.</p><p><strong>Conclusions: </strong>Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity.</p><p><strong>Implications for cancer survivors: </strong>Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9562014","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}