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1.
Cancer Rep (Hoboken) ; 7(5): e2071, 2024 May.
Article in English | MEDLINE | ID: mdl-38767531

ABSTRACT

BACKGROUND: Patient and public involvement and engagement (PPIE) in healthcare research is crucial for effectively addressing patients' needs and setting appropriate research priorities. However, there is a lack of awareness and adequate methods for practicing PPIE, especially for vulnerable groups like childhood cancer survivors. AIMS: This project aimed to develop and evaluate engagement methods to actively involve pediatric oncological patients, survivors, and their caregivers in developing relevant research questions and practical study designs. METHODS AND RESULTS: An interdisciplinary working group recruited n = 16 childhood cancer survivors and their caregivers to work through the entire process of developing a research question and a practicable study design. A systematic literature review was conducted to gather adequate PPIE methods which were then applied and evaluated in a series of three workshop modules, each lasting 1.5 days. The applied methods were continuously evaluated, while a monitoring group oversaw the project and continuously developed and adapted additional methods. The participants rated the different methods with varying scores. Over the workshop series, the participants successfully developed a research question, devised an intervention, and designed a study to evaluate their project. They also reported increased expertise in PPIE and research knowledge compared to the baseline. The project resulted in a practical toolbox for future research, encompassing the final workshop structure, evaluated methods and materials, guiding principles, and general recommendations. CONCLUSION: These findings demonstrate that with a diverse set of effective methods and flexible support, actively involving patients, survivors, and caregivers can uncover patients' unmet disease-related needs and generate practical solutions apt for scientific evaluation. The resulting toolbox, filled with evaluated and adaptable methods (workbook, Supplement 1 and 2), equips future scientists with the necessary resources to successfully perform PPIE in the development of health care research projects that effectively integrate patients' perspectives and address actual cancer-related needs. This integration of PPIE practices has the potential to enhance the quality and relevance of health research and care, as well as to increase patient empowerment leading to sustainable improvements in patients' quality of life.


Subject(s)
Cancer Survivors , Neoplasms , Parents , Patient Participation , Humans , Cancer Survivors/psychology , Parents/psychology , Patient Participation/psychology , Neoplasms/psychology , Neoplasms/therapy , Child , Female , Male , Caregivers/psychology , Adult , Adolescent , Research Design
2.
Support Care Cancer ; 32(6): 337, 2024 May 10.
Article in English | MEDLINE | ID: mdl-38727728

ABSTRACT

PURPOSE: The challenges of fertility loss owing to cancer treatment persist long after treatment. However, psychosocial care for fertility among cancer survivors who have completed cancer treatment is insufficient. This systematic review examined psychosocial experiences related to the potential loss of fertility and unsuccessful pregnancy after treatment in cancer survivors of reproductive age to identify psychosocial care needs. METHODS: A systematic review was conducted using the online databases PubMed, Cochrane Library, PsycINFO, CINAHL, and Ichushi-Web between August and December 2022 to identify studies that addressed psychosocial experiences after fertility loss or failure to conceive among young cancer survivors. Study quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: Forty studies were included, revealing psychosocial experiences across five categories: subjective fear of (potential) fertility loss, impact on romantic relationships, alternative methods for family building, reliance on social support, and specialized care. Only one study addressed the psychosocial aspects after complete loss of fertility in young cancer survivors. CONCLUSIONS: The possibility and uncertainty of fertility loss led to stress and depression, loss of identity, decreased opportunities to meet a new partner, and damaged relationships established before diagnosis. The needs encompass fertility preservation, sexuality, approaches to building a family, partner communication, and other diverse needs.


Subject(s)
Cancer Survivors , Humans , Cancer Survivors/psychology , Female , Pregnancy , Social Support , Neoplasms/psychology , Neoplasms/complications , Neoplasms/therapy , Fertility Preservation/methods , Fertility Preservation/psychology
3.
JMIR Res Protoc ; 13: e52274, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38753415

ABSTRACT

BACKGROUND: While the scientific community widely recognizes the benefits of physical activity (PA) in oncology supportive care, cancer survivors who have undergone chemo- or radio-immunotherapy treatments struggle to meet PA recommendations. This underscores the importance of identifying factors influencing active lifestyle adoption and maintenance and proposing a multilevel model (micro-, meso-, and macrolevel) to better understand facilitators and barriers. Currently, no socioecological model explains an active lifestyle in the posttreatment phase of breast, colorectal, prostate, and lung cancers. OBJECTIVE: The objective is to identify factors influencing an active lifestyle in cancer survivorship and assess the feasibility of an individualized program targeting an active lifestyle. The objectives will be addressed in 3 stages. Stage 1 aims to elucidate factors associated with the active lifestyle of cancer survivors. Stage 2 involves developing an explanatory model based on previously identified factors to create a tailored health education program for an active lifestyle after oncology treatments. Stage 3 aims to evaluate the feasibility and potential effects of this personalized health education program after its national implementation. METHODS: First, the exploration of factors influencing PA (stage 1) will be based on a mixed methods approach, using an explanatory sequential design and multilevel analysis. The quantitative phase involves completing a questionnaire from a socioecological perspective. Subsequently, a subset of respondents will engage in semistructured interviews to aid in interpreting the quantitative results. This phase aims to construct a model of the factors influencing an active lifestyle and develop an individualized 12-week program based on our earlier findings (stage 2). In stage 3, we will implement our multicenter, multimodal program for 150 physically inactive and sedentary cancer survivors across metropolitan France. Program feasibility will be evaluated. Measured PA level by connected device and multidimensional variables such as declared PA and sedentary behaviors, PA readiness, motivation, PA preferences, PA knowledge and skills, and barriers and facilitators will be assessed before and during the program and 52 weeks afterward. RESULTS: The institutional review board approved the mixed methods study (phase 1) in April 2020, and the intervention (phase 3) was approved in March 2022. Recruitment and data collection commenced in April 2022, with intervention implementation concluded in May 2023. Data collection and full analysis are expected to be finalized by July 2024. CONCLUSIONS: The Determinants and Factors of Physical Activity After Oncology Treatments (DEFACTO) study seeks to enhance our understanding, within our socioecological model, of factors influencing an active lifestyle among cancer survivors and to assess whether a tailored intervention based on this model can support an active lifestyle. TRIAL REGISTRATION: ClinicalTrials.gov NCT05354882; https://www.clinicaltrials.gov/study/NCT05354882. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52274.


Subject(s)
Cancer Survivors , Exercise , Neoplasms , Humans , France , Cancer Survivors/psychology , Neoplasms/therapy , Male , Female , Adult , Middle Aged , Surveys and Questionnaires
4.
Support Care Cancer ; 32(6): 360, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38753060

ABSTRACT

OBJECTIVE: Our understanding of the experiences of prostate cancer survivors regarding their sexual life and related issues remains limited. Therefore, this study aimed to explore sexual dysfunction and associated coping strategies among Iranian prostate cancer survivors. METHODS: A qualitative study was undertaken. Participants were 15 Iranian prostate cancer survivors chosen using purposeful sampling. Data collection involved conducting in-depth semi-structured interviews, followed by the utilization of the conventional qualitative content analysis method for data analysis. RESULTS: Three themes were developed: (a) suspension of sexual life-treatment for prostate cancer significantly impacted participants' sexual lives; (b) emotional resilience and psychological coping strategies-various psychological strategies were used to tackle sexual dysfunction; (c) efforts to regain sexual function-several strategies were applied to enhance sexual performance. CONCLUSION: Our study findings provide insights into the experiences of prostate cancer survivors and subsequent shifts in their sexual dynamics and coping with the disease. Healthcare providers should actively identify patients' concerns and develop culturally tailored care strategies to address sexual challenges and improve coping among prostate cancer survivors.


Subject(s)
Adaptation, Psychological , Cancer Survivors , Prostatic Neoplasms , Qualitative Research , Sexual Dysfunction, Physiological , Humans , Male , Iran , Prostatic Neoplasms/psychology , Cancer Survivors/psychology , Middle Aged , Aged , Sexual Dysfunction, Physiological/etiology , Sexual Dysfunction, Physiological/psychology , Interviews as Topic , Resilience, Psychological , Coping Skills
5.
Support Care Cancer ; 32(5): 326, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38700725

ABSTRACT

PURPOSE: This study aimed to explore levels of adherence to dietary guidelines, and factors associated with dietary guideline adherence, among rural Australian cancer survivors. METHODS: A cross-sectional study was undertaken. We recruited a convenience sample of adults with cancer who attended the chemotherapy day unit or allied health appointments at a rural hospital in Baw Baw Shire, Victoria, Australia, between August 2017 and December 2021. Dietary guideline adherence was assessed by cross-referencing participants' responses to an adapted version of the Dietary Questionnaire for Epidemiological Studies with dietary recommendations in Australian dietary guidelines. Binary logistic regression was used to assess factors associated with dietary guideline adherence for fruits and whole red meats. RESULTS: There were 107 rural cancer survivors (median age, 67 years). Dietary guideline adherence was highest for alcohol (88%) followed by whole red meats (63%), fruits (56%), processed red meats (24%), cereals/breads/grains (7%), and vegetables (4%). Relative to those aged < 65 years, 65-74-year-olds had 5.7-fold greater odds (adjusted odds ratio (aOR) = 5.74, 95% confidence interval (CI) = 1.91-17.17) of adhering to the dietary guideline for fruits. Relative to those who had completed/ceased treatment, participants who were currently receiving treatment had 78% lower odds (aOR = 0.22, 95% CI = 0.09-0.59) of adhering to the dietary guideline for fruits. CONCLUSION: This study contributes preliminary data on adherence to dietary guidelines and associated factors among rural Australian cancer survivors. Dietary guideline adherence varied across food groups and was mostly low, albeit not markedly worse than Australia's national population for the fruits and vegetables groups. The mostly low adherence in our sample suggests a potential need to increase provision of dietary information, supportive care screening, and, wherever necessary, dietetics referrals, assessments, and interventions among rural cancer survivors. Larger, longitudinal studies of adherence to dietary guidelines and/or tailored, cancer-specific dietary recommendations should be undertaken in future.


Subject(s)
Cancer Survivors , Nutrition Policy , Rural Population , Humans , Cross-Sectional Studies , Male , Female , Cancer Survivors/statistics & numerical data , Cancer Survivors/psychology , Aged , Middle Aged , Rural Population/statistics & numerical data , Neoplasms , Adult , Victoria , Guideline Adherence/statistics & numerical data , Patient Compliance/statistics & numerical data , Surveys and Questionnaires , Aged, 80 and over , Australia , Diet/statistics & numerical data
6.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Article in English | MEDLINE | ID: mdl-38743085

ABSTRACT

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.


Subject(s)
Cancer Survivors , Hispanic or Latino , Spirituality , Humans , Female , Cancer Survivors/psychology , Male , Hispanic or Latino/psychology , Adult , Adolescent , Young Adult , Pilot Projects , Hope , Neoplasms/psychology , Neoplasms/therapy , Qualitative Research , Adaptation, Psychological
7.
JAMA Netw Open ; 7(5): e2410731, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38728029

ABSTRACT

Importance: Employment is an important factor in quality of life and provides social and economic support. Longitudinal data on employment and associations with chronic health conditions for adult survivors of childhood cancer are lacking. Objective: To evaluate longitudinal trends in employment among survivors of childhood cancer. Design, Setting, and Participants: Retrospective cohort study of 5-year cancer survivors diagnosed at age 20 years or younger between 1970 and 1986 enrolled in the multi-institutional Childhood Cancer Survivor Study (CCSS). Sex-stratified employment status at baseline (2002 to 2004) and follow-up (2014 to 2016) was compared with general population rates from the Behavioral Risk Factor Surveillance System cohort. Data were analyzed from July 2021 to June 2022. Exposures: Cancer therapy and preexisting and newly developed chronic health conditions. Main Outcomes and Measures: Standardized prevalence ratios of employment (full-time or part-time, health-related unemployment, unemployed, not in labor force) among adult (aged ≥25 years) survivors between baseline and follow-up compared with the general population. Longitudinal assessment of negative employment transitions (full-time to part-time or unemployed at follow-up). Results: Female participants (3076 participants at baseline; 2852 at follow-up) were a median (range) age of 33 (25-53) years at baseline and 42 (27-65) years at follow-up; male participants (3196 participants at baseline; 2557 at follow-up) were 33 (25-54) and 43 (28-64) years, respectively. The prevalence of full-time or part-time employment at baseline and follow-up was 2215 of 3076 (71.3%) and 1933 of 2852 (64.8%) for female participants and 2753 of 3196 (85.3%) and 2079 of 2557 (77.3%) for male participants, respectively, with declining standardized prevalence ratios over time (female participant baseline, 1.01; 95% CI, 0.98-1.03; follow-up, 0.94; 95% CI, 0.90-0.98; P < .001; male participant baseline, 0.96; 95% CI, 0.94-0.97; follow-up, 0.92; 95% CI, 0.89-0.95; P = .02). While the prevalence of health-related unemployment increased (female participants, 11.6% to 17.2%; male participants, 8.1% to 17.1%), the standardized prevalence ratio remained higher than the general population and declined over time (female participant baseline, 3.78; 95% CI, 3.37-4.23; follow-up, 2.23; 95% CI, 1.97-2.51; P < .001; male participant baseline, 3.12; 95% CI, 2.71-3.60; follow-up, 2.61; 95% CI, 2.24-3.03; P = .002). Among survivors employed full-time at baseline (1488 female participants; 1933 male participants), 285 female participants (19.2%) and 248 male participants (12.8%) experienced a negative employment transition (median [range] follow-up, 11.5 [9.4-13.8] years). Higher numbers and grades of chronic health conditions were significantly associated with these transitions. Conclusions and Relevance: In this retrospective analysis of adult survivors of childhood cancer, significant declines in employment and increases in health-related unemployment among cancer survivors compared with the general population were identified. A substantial portion of survivors in the midcareer age range fell out of the workforce. Awareness among clinicians, caregivers, and employers may facilitate clinical counseling and occupational provisions for supportive work accommodations.


Subject(s)
Cancer Survivors , Employment , Neoplasms , Humans , Female , Male , Cancer Survivors/statistics & numerical data , Cancer Survivors/psychology , Employment/statistics & numerical data , Adult , Chronic Disease/epidemiology , Retrospective Studies , Longitudinal Studies , Neoplasms/epidemiology , Neoplasms/psychology , Adolescent , Child , Young Adult , Middle Aged , United States/epidemiology
8.
PLoS One ; 19(5): e0300396, 2024.
Article in English | MEDLINE | ID: mdl-38728325

ABSTRACT

For breast cancer survivors, returning to work is an important step for their personal, financial, and psycho-social recovery. Returning to work as a school counselor can be particularly challenging because of the demands of their job and stress at work. This qualitative study examines return to work among school counselors who are breast cancer survivors. In-depth, semi-structured interviews were conducted with 28 survivors of breast cancer stages I-III between the ages of 32 and 55, and up to ten years after the completion of chemotherapy. Interviews focused on the discovery of the illness, treatment period, ramifications of the diagnosis on various aspects of life, and implications for work. Using thematic analysis of the data collected, analysis of the findings revealed three key themes: 1) "Everyone is replaceable": The significance of disruptions in work continuity for school counselors who are breast cancer survivors. 2) "From Zero to a Hundred": Challenges Faced by Counselors in Returning to Work after Breast Cancer Recovery.3) "It's hard to listen to counselees' problems when I am immersed in my own crisis": How surviving breast cancer affects return to work among school counselors. Findings highlight the unique needs of these counselors and the challenges they face upon returning to work. The study discusses recommendations for school principals including training, advocacy, and awareness to support survivors and improve their return to work.


Subject(s)
Breast Neoplasms , Cancer Survivors , Counselors , Qualitative Research , Return to Work , Humans , Female , Breast Neoplasms/psychology , Return to Work/psychology , Cancer Survivors/psychology , Middle Aged , Adult , Counselors/psychology , Schools , Counseling
9.
Int J Behav Nutr Phys Act ; 21(1): 51, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38698447

ABSTRACT

BACKGROUND: There is a growing population of survivors of colorectal cancer (CRC). Fatigue and insomnia are common symptoms after CRC, negatively influencing health-related quality of life (HRQoL). Besides increasing physical activity and decreasing sedentary behavior, the timing and patterns of physical activity and rest over the 24-h day (i.e. diurnal rest-activity rhythms) could also play a role in alleviating these symptoms and improving HRQoL. We investigated longitudinal associations of the diurnal rest-activity rhythm (RAR) with fatigue, insomnia, and HRQoL in survivors of CRC. METHODS: In a prospective cohort study among survivors of stage I-III CRC, 5 repeated measurements were performed from 6 weeks up to 5 years post-treatment. Parameters of RAR, including mesor, amplitude, acrophase, circadian quotient, dichotomy index, and 24-h autocorrelation coefficient, were assessed by a custom MATLAB program using data from tri-axial accelerometers worn on the upper thigh for 7 consecutive days. Fatigue, insomnia, and HRQoL were measured by validated questionnaires. Confounder-adjusted linear mixed models were applied to analyze longitudinal associations of RAR with fatigue, insomnia, and HRQoL from 6 weeks until 5 years post-treatment. Additionally, intra-individual and inter-individual associations over time were separated. RESULTS: Data were available from 289 survivors of CRC. All RAR parameters except for 24-h autocorrelation increased from 6 weeks to 6 months post-treatment, after which they remained relatively stable. A higher mesor, amplitude, circadian quotient, dichotomy index, and 24-h autocorrelation were statistically significantly associated with less fatigue and better HRQoL over time. A higher amplitude and circadian quotient were associated with lower insomnia. Most of these associations appeared driven by both within-person changes over time and between-person differences in RAR parameters. No significant associations were observed for acrophase. CONCLUSIONS: In the first five years after CRC treatment, adhering to a generally more active (mesor) and consistent (24-h autocorrelation) RAR, with a pronounced peak activity (amplitude) and a marked difference between daytime and nighttime activity (dichotomy index) was found to be associated with lower fatigue, lower insomnia, and a better HRQoL. Future intervention studies are needed to investigate if restoring RAR among survivors of CRC could help to alleviate symptoms of fatigue and insomnia while enhancing their HRQoL. TRIAL REGISTRATION: EnCoRe study NL6904 ( https://www.onderzoekmetmensen.nl/ ).


Subject(s)
Cancer Survivors , Circadian Rhythm , Colorectal Neoplasms , Exercise , Fatigue , Quality of Life , Rest , Sleep Initiation and Maintenance Disorders , Humans , Sleep Initiation and Maintenance Disorders/therapy , Male , Female , Middle Aged , Prospective Studies , Circadian Rhythm/physiology , Cancer Survivors/psychology , Aged , Longitudinal Studies , Surveys and Questionnaires
10.
Psychooncology ; 33(5): e6345, 2024 May.
Article in English | MEDLINE | ID: mdl-38708858

ABSTRACT

OBJECTIVES: Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors. METHODS: Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated. RESULTS: Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability. CONCLUSIONS: Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.


Subject(s)
Cancer Survivors , Caregivers , Social Stigma , Humans , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Kenya , Male , Female , Child , Caregivers/psychology , Adolescent , Surveys and Questionnaires , Adult , Neoplasms/psychology , Child, Preschool , Middle Aged
11.
JAMA Netw Open ; 7(5): e2410145, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38713463

ABSTRACT

Importance: Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. Objective: To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). Design, Setting, and Participants: A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Exposures: Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Main Outcomes and Measures: Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Results: Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. Conclusions and Relevance: In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.


Subject(s)
Cancer Survivors , Neoplasms , Quality of Life , Humans , Male , Female , Child , Adolescent , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Cross-Sectional Studies , Quality of Life/psychology , Neoplasms/psychology , Caregivers/psychology , Cost of Illness , Anxiety/epidemiology , Anxiety/psychology , Anxiety/etiology , Resilience, Psychological , Symptom Burden
12.
JCO Glob Oncol ; 10: e2300418, 2024 May.
Article in English | MEDLINE | ID: mdl-38781550

ABSTRACT

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.


Subject(s)
Cancer Survivors , Developing Countries , Humans , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Cross-Sectional Studies , Surveys and Questionnaires , Neoplasms/psychology , Neoplasms/therapy , Developed Countries , Male , Health Services Accessibility/statistics & numerical data , Female , Psycho-Oncology , Survivorship
13.
Support Care Cancer ; 32(6): 371, 2024 May 22.
Article in English | MEDLINE | ID: mdl-38775966

ABSTRACT

PURPOSE: Many survivors of rectal cancer experience persistent bowel dysfunction. There are few evidence-based symptom management interventions to improve bowel control. The purpose of this study is to describe recruitment and pre-randomization baseline sociodemographic, health status, and clinical characteristics for SWOG S1820, a trial of the Altering Intake, Managing Symptoms in Rectal Cancer (AIMS-RC) intervention. METHODS: SWOG S1820 aimed to determine the preliminary efficacy, feasibility, and acceptability of AIMS-RC, a symptom management intervention for bowel health, comparing intervention to attention control. Survivors with a history of cancers of the rectosigmoid colon or rectum, within 6-24 months of primary treatment completion, with a post-surgical permanent ostomy or anastomosis, and over 18 years of age were enrolled. Outcomes included total bowel function, low anterior resection syndrome, quality of life, motivation for managing bowel health, self-efficacy for managing symptoms, positive and negative affect, and study feasibility and acceptability. RESULTS: The trial completed accrual over a 29-month period and enrolled 117 participants from 34 institutions across 17 states and one US Pacific territory. At baseline, most enrolled participants reported self-imposed diet adjustments after surgery, persistent dietary intolerances, and bowel discomfort post-treatment, with high levels of constipation and diarrhea (grades 1-4). CONCLUSIONS: SWOG S1820 was able to recruit, in a timely manner, a study cohort that is demographically representative of US survivors of rectal cancer. Baseline characteristics illustrate the connection between diet/eating and bowel symptoms post-treatment, with many participants reporting diet adjustments and persistent inability to be comfortable with dietary intake. GOV REGISTRATION DATE: 12/19/2019. GOV IDENTIFIER: NCT#04205955.


Subject(s)
Cancer Survivors , Quality of Life , Rectal Neoplasms , Humans , Rectal Neoplasms/surgery , Male , Female , Middle Aged , Cancer Survivors/psychology , Aged , Adult , Patient Selection , Self Efficacy , Feasibility Studies
14.
Arch Dermatol Res ; 316(6): 223, 2024 May 24.
Article in English | MEDLINE | ID: mdl-38787423

ABSTRACT

Treatments for breast cancer can have an array of adverse effects, including hair loss, scarring, and irritated skin. These physical outcomes can, in turn, lead to body image concerns, anxiety, and depression. Fortunately, there is growing evidence that certain cosmetic therapies can improve patient self-image. Here we review various cosmetic treatment options including hair camouflage, eyebrow and eyelash camouflage, treatments for hirsutism, nipple and areola tattooing, post-mastectomy scar tattooing, treatments for dry skin/xerosis, removal of post-radiation telangiectasias, and lightening of post-radiation hyperpigmentation. For each patient concern, we report potential procedures, clinical evidence of impact on quality of life, special considerations, and safety concerns. This article aims to equip dermatologists with resources so that they may effectively counsel breast cancer survivors who express treatment-related cosmetic concerns.


Subject(s)
Breast Neoplasms , Quality of Life , Humans , Breast Neoplasms/therapy , Breast Neoplasms/surgery , Breast Neoplasms/radiotherapy , Female , Cosmetic Techniques/adverse effects , Mastectomy/adverse effects , Body Image/psychology , Cicatrix/etiology , Cicatrix/psychology , Cicatrix/therapy , Cancer Survivors/psychology , Tattooing/adverse effects
15.
Support Care Cancer ; 32(5): 322, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38695959

ABSTRACT

PURPOSE: Lung cancer survivors have more psychosocial problems, including depression and anxiety disorder, than other cancer survivors. Lung cancer-specific symptoms, such as cough, dyspnea, or pain in chest, might increase FCR among survivors. We aimed to evaluate the association between lung cancer-specific symptoms and FCR among recurrence-free non-small cell lung cancer (NSCLC) survivors. METHODS: This is a cross-sectional study. Recurrence-free NSCLC survivors were recruited from January to October 2020 at a tertiary hospital in Seoul, Korea. We measured FCR using the Korean version of FCRI-SF and categorized them into three groups: non-clinical FCR (nFCR, < 13), subclinical FCR (sFCR, 13 to 21), and clinical FCR (cFCR, ≥ 22). Lung cancer-specific symptoms were measured using the Korean version of EORTC QLQ-LC13 and EORTC QLQ-C30. RESULTS: A total of 727 survivors were enrolled. One-third (30.8%) of survivors reported sFCR, and 19.7% had cFCR. In a multivariate analysis, survivors with severe pain in chest were 4.7 times (95% CI: 2.4-9.0) more likely to experience cFCR compared to those without it. Mild dyspnea (OR 1.7, 95% CI: 1.1-2.7) and mild dysphagia (OR 2.4, 95% CI: 1.3-4.4) were associated with cFCR. Survivors with sFCR (Coef. - 6.3, 95% CI: - 9.8, - 2.8) and cFCR (Coef. - 11.3, 95% CI: - 15.5, - 7.2) had poorer quality of life compared to survivors with nFCR. CONCLUSION: NSCLC survivors were experiencing lung cancer-specific symptoms even a few years after treatment, which were associated with cFCR, resulting in poor HRQoL. It is necessary to develop a lung cancer-specific symptom checklist and use it during even long-term surveillance.


Subject(s)
Cancer Survivors , Carcinoma, Non-Small-Cell Lung , Fear , Lung Neoplasms , Neoplasm Recurrence, Local , Humans , Male , Female , Cross-Sectional Studies , Carcinoma, Non-Small-Cell Lung/psychology , Middle Aged , Lung Neoplasms/psychology , Cancer Survivors/psychology , Aged , Neoplasm Recurrence, Local/psychology , Neoplasm Recurrence, Local/epidemiology , Republic of Korea/epidemiology , Quality of Life , Surveys and Questionnaires , Dyspnea/etiology , Dyspnea/epidemiology
16.
J Pak Med Assoc ; 74(4 (Supple-4)): S132-S135, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38712421

ABSTRACT

Breast cancer (BC) patients and survivors can experience immense emotional and psychosocial trauma. Treatment modalities for BC, including surgery, chemotherapy and radiotherapy are associated with certain displeasing and undesirable effects, including physical restrictions as well as mental stress. However, it has been ascertained that appropriate supportive and rehabilitative strategies can significantly help to alleviate the distress. Along with several conventional physical therapy options, the novel Virtual Reality (VR) tool has opened a new gateway in rehabilitative approaches in patients with BC. We reviewed the role of VR based management for BC-related incapacitations and found that its efficacy is comparable to that of contemporary therapy options. It has the additional benefits of modulating pain perceptions, improving mobility, and overall enhancing the quality of life of BC survivors.


Subject(s)
Breast Neoplasms , Quality of Life , Virtual Reality , Humans , Breast Neoplasms/rehabilitation , Breast Neoplasms/psychology , Female , Cancer Survivors/psychology , Virtual Reality Exposure Therapy/methods
18.
BMC Public Health ; 24(1): 1287, 2024 May 10.
Article in English | MEDLINE | ID: mdl-38730364

ABSTRACT

BACKGROUND: Frailty not only affects disease survival but also impacts the long-term function and quality life of all adults diagnosed with and/or treated for cancer.The American Heart Association has introduced Life's Essential 8 (LE8) as a novel metric for assessing cardiovascular health. Currently, LE8's application in evaluating the frailty of cancer survivors remains unreported. This research seeks to explore the connection between LE8 scores and frailty levels in cancer survivors across the United States, thereby addressing a significant void in existing studies. METHODS: This study analyzed data from cancer survivors enrolled in the National Health and Nutrition Examination Surveys (NHANES) spanning the years 2005 to 2018, providing a comprehensive dataset. Multivariable logistic regression models were used to examine the linkage between LE8 rankings and frailty condition in cancer survivors. Furthermore, the study delved deeper into this correlation using restricted cubic spline (RCS) curves and subgroup analyses. RESULTS: In the fully adjusted model, an increased LE8 level was closely associated with a reduced odds ratio of frailty among cancer survivors, with an OR of 0.95 (95% CI: 0.94-0.96, p < 0.0001).This pattern persisted across different categorizations of LE8 into low, moderate, and high groups, demonstrating a consistent trend. The analysis revealed a non-linear relationship between LE8 scores and frailty status, further supporting a straightforward association (p-value for non-linearity = 0.0729). CONCLUSION: Studies have found that the higher the LE8 score, the less likely a cancer patient is to develop debilitating symptoms.This indicates that the LE8 scores may provide an opportunity for interventions aimed at improving the prognosis of cancer patients.


Subject(s)
Cancer Survivors , Frailty , Nutrition Surveys , Humans , Male , United States/epidemiology , Female , Frailty/epidemiology , Cancer Survivors/statistics & numerical data , Cancer Survivors/psychology , Cross-Sectional Studies , Middle Aged , Aged , Adult , Quality of Life , Neoplasms/mortality
19.
Support Care Cancer ; 32(6): 376, 2024 May 23.
Article in English | MEDLINE | ID: mdl-38780826

ABSTRACT

OBJECTIVE: This study aimed to evaluate the impact of an intervention using the Treatment Summary and Survivorship Care Plan (TSSCP-P) on self-efficacy and quality of life (QoL) in breast cancer survivors. METHOD: A clinical study, randomized and controlled, conducted to assess self-efficacy and QOL in breast cancer survivors. The participants were randomly assigned to either an intervention group or a control group. The intervention group received individualized nursing consultations guided by the TSSCP-P, while the control group received standard care. Self-efficacy and QoL were assessed at three evaluation moments using validated scales: Functional Assessment of Cancer Therapy-Breast Plus Anm Morbidity (FACT B + 4) and Perceived General Self-Efficacy Scale. Statistical analyses, including regression analysis and hypothesis tests, were conducted to examine the effects of the intervention on self-efficacy and QoL. RESULTS: Female breast cancer survivors (N = 101) were recruited. The intervention group demonstrated a significant improvement in self-efficacy over time compared to the control group (p = 0.01). However, no significant differences were observed in the overall QoL scores between the two groups. Subscale analysis revealed a significant improvement in physical well-being for the intervention group (p = 0.04), while emotional well-being showed a non-significant improvement (p = 0.07). The study suggests that individualized care plans and support strategies, such as the TSSCP-P, can positively influence breast cancer survivors' self-efficacy and certain aspects of their QoL. CONCLUSION: These findings highlight the potential benefits of the TSSCP-P intervention in enhancing self-efficacy among breast cancer survivors. However, further research is needed to explore its impact on overall QoL and its effectiveness across different stages of breast cancer, as well as with longer follow-up periods. CLINICAL TRIAL REGISTRATION NUMBER: Brazilian Registry of Clinical Trials (ReBEC- RBR-2m7qkjy; UTN code: U1111-1257-3560), registered in April 19th, 2022.


Subject(s)
Breast Neoplasms , Cancer Survivors , Quality of Life , Self Efficacy , Humans , Female , Breast Neoplasms/therapy , Breast Neoplasms/psychology , Cancer Survivors/psychology , Middle Aged , Brazil , Adult , Patient Care Planning , Aged
20.
PLoS One ; 19(5): e0299321, 2024.
Article in English | MEDLINE | ID: mdl-38748708

ABSTRACT

BACKGROUND: Childhood, adolescent and young adult (CAYA) cancer survivors are vulnerable to adverse late-effects. For CAYA cancer survivors, tobacco smoking is the most important preventable cause of ill-health and early death. Yet, effective strategies to support smoking cessation in this group are lacking. The PRISM study aims to undertake multi-method formative research to explore the need for, and if appropriate, inform the future development of an evidence-based and theory-informed tobacco smoking cessation intervention for CAYA cancer survivors. MATERIALS AND METHODS: PRISM involves three phases of: 1) an environmental scan using multiple strategies to identify and examine a) smoking cessation interventions for CAYA cancer survivors that are published in the international literature and b) current smoking cessation services in England that may be available to, or tailorable to, CAYA cancer survivors; 2) a qualitative study involving semi-structured interviews with CAYA cancer survivors (aged 16-29 years and who are current or recent ex-smokers and/or current vapers) to explore their views and experiences of smoking, smoking cessation and vaping; and 3) stakeholder workshops with survivors, healthcare professionals and other stakeholders to consider the potential for a smoking cessation intervention for CAYA cancer survivors and what such an intervention would need to target and change. Findings will be disseminated to patient groups, healthcare professionals and researchers, through conference presentations, journal papers, plain English summaries and social media. DISCUSSION: PRISM will explore current delivery of, perceived need for, and barriers and facilitators to, smoking cessation advice and support to CAYA cancer survivors from the perspective of both survivors and healthcare professionals. A key strength of PRISM is the user involvement throughout the study and the additional exploration of survivors' views on vaping, a behaviour which often co-occurs with smoking. PRISM is the first step in the development of a person-centred, evidence- and theory-based smoking cessation intervention for CAYA cancer survivors who smoke, which if effective, will reduce morbidity and mortality in the CAYA cancer survivor population.


Subject(s)
Cancer Survivors , Smoking Cessation , Humans , Smoking Cessation/methods , Smoking Cessation/psychology , Cancer Survivors/psychology , Adolescent , Young Adult , England , Adult , Female , Male , Neoplasms/psychology , Neoplasms/therapy , Child
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