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1.
J Cancer Surviv ; 17(4): 1184-1190, 2023 08.
Article in English | MEDLINE | ID: mdl-35031917

ABSTRACT

PURPOSE: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. The ECHO training program provides reproductive health communication training to individuals providing care for AYAs with cancer. The purpose of this project is to describe the growth of ECHO and evaluate changes in learner engagement over a 5-year period. METHODS: ECHO is an 8-week online training program offered annually, with the program including learning modules, discussion topics and reflections, and synchronous discussions. Reflection quality scores and number of words were compared between the 5 cohorts using ANOVA with a p < .05 level of significance. Descriptive statistics summarized module topics, reflections, and synchronous discussions. RESULTS: The average number of reflections per unique learner increased each year (1.4 in cohort 1 vs 4.1 in cohort 5), as did average length and quality of reflections (72.1 words in cohort 1 vs 203.4 words in cohort 5, p < .0001; score of 1.21 in cohort 1 vs 4.46 in cohort 5, p < .0001). The percentage of learners in attendance at synchronous discussions increased between cohorts 4 and 5 (4.8% of learners in cohort 4 vs 18.8% of learners cohort 5). CONCLUSIONS: The ECHO program has seen significant growth and improvement in learner engagement over a 5-year period. This is particularly important given that student learning outcomes in online courses can be predicted by the level of engagement with online content. IMPLICATIONS FOR CANCER SURVIVORS: As fertility and reproductive health remain a top life goal and discussion priority for AYAs surviving cancer, increasing clinical competencies of AHPs in oncofertility is essential.


Subject(s)
Cancer Survivors , Fertility Preservation , Health Educators , Health Personnel , Information Dissemination , Reproductive Health , Health Personnel/education , Reproductive Health/education , Health Educators/education , Humans , Male , Female , Adolescent , Young Adult , Cancer Survivors/education , Cancer Survivors/psychology
2.
JAMA Netw Open ; 4(11): e2136039, 2021 11 01.
Article in English | MEDLINE | ID: mdl-34817581

ABSTRACT

Importance: Adolescents and young adults (AYAs) with cancer have a high risk of poor psychosocial outcomes. The Promoting Resilience in Stress Management (PRISM) intervention is one of few psychosocial interventions targeting younger people with cancer that has demonstrated efficacy in a randomized clinical trial. Objective: To explore 2-year trajectories of patient-reported well-being among AYA cancer survivors. The hypothesis was that AYAs who initially responded to PRISM would report sustained positive changes. Design, Setting, and Participants: This secondary analysis of data from a single-center, parallel, phase 2 randomized clinical trial was conducted from January 2015 to October 2016. Eligible participants were English-speaking AYAs between ages 13 and 25 years with cancer treated at a single, quaternary children's hospital in the US. Participants were randomly assigned (1:1) to PRISM or usual care. Data were analyzed between March 2021 and June 2021. Intervention: PRISM is a brief, skills-based coaching program targeting 4 resilience resources (stress management, goal setting, cognitive reframing, and meaning making). Main Outcomes and Measures: Patient-reported cancer-related quality of life (QoL) (PedsQL scale), hope (Hope scale), resilience (Connor-Davidson Resilience scale), and psychological distress (Kessler-6 scale) were collected at baseline, 6, 12, and 24 months. Data from AYAs who remained alive at 24 months were analyzed. Improvement was defined as a positive change in instrument scores between baseline and 6 months (ie, the end of the PRISM program) and used linear mixed effects regression to assess changes over time. Results: A total of 57 AYAs were included in analysis at 24 months (62% of 92 randomized). Twenty-six participants (46%) were female; 36 (63%) were between ages 13 and 17 years; and 20 (35%) identified as part of a racial or ethnic minority group (4 [7%] Asian, 11 [19%] Hispanic or Latino, 16 [28%] mixed race or other). PRISM was associated with improved QoL, hope, resilience, and distress between baseline and 6 months, and these associations were sustained for QoL over 12 months (ß = 7.4; 95% CI, 0.8 to 14; P = .03) and hope throughout the study period (12 months: ß = 6.2; 95% CI, 2.7 to 9.6; P < .001; 24 months: ß = 4.6; 95% CI, 1 to 8.3; P = .01). Of those whose scores improved between baseline and 6 months, PRISM participants more commonly reported sustained improvements in QoL (16 of 21 participants [76%] vs 8 of 17 [47%]), hope (14 of 24 participants [58%] vs 6 of 14 [43%]), resilience (9 of 18 participants [50%] vs 4 of 14 [29%]), and distress (14 of 19 participants [74%] vs 6 of 19 [32%]) at 24 months compared with usual care. Conclusions and Relevance: These results suggest that PRISM was associated with sustained improvements in psychosocial outcomes as reported by adolescents and young adults. Those who responded to PRISM in the first 6 months reported continued well-being 2 years later. Trial Registration: ClinicalTrials.gov Identifier: NCT02340884.


Subject(s)
Adaptation, Psychological , Cancer Survivors/education , Cancer Survivors/psychology , Neoplasms/psychology , Quality of Life/psychology , Resilience, Psychological , Stress, Psychological , Adolescent , Adult , Female , Humans , Male , United States , Young Adult
3.
Nutrients ; 13(7)2021 Jul 06.
Article in English | MEDLINE | ID: mdl-34371829

ABSTRACT

Harvest for Health is a home-based vegetable gardening intervention that pairs cancer survivors with Master Gardeners from the Cooperative Extension System. Initially developed and tested in Alabama, the program was adapted for the different climate, growing conditions, and population in New Mexico. This paper chronicles the feasibility, acceptability, and preliminary efficacy of "Southwest Harvest for Health". During the nine-month single-arm trial, 30 cancer survivor-Master Gardener dyads worked together to establish and maintain three seasonal gardens. Primary outcomes were accrual, retention, and satisfaction. Secondary outcomes were vegetable and fruit (V and F) intake, physical activity, and quality of life. Recruitment was diverse and robust, with 30 survivors of various cancers, aged 50-83, roughly one-third minority, and two-thirds females enrolled in just 60 days. Despite challenges due to the COVID-19 pandemic, retention to the nine-month study was 100%, 93% reported "good-to-excellent" satisfaction, and 87% "would do it again." A median increase of 1.2 servings of V and F/day was documented. The adapted home-based vegetable gardening program was feasible, well-received, and resulted in increased V and F consumption among adult cancer survivors. Future studies are needed to evaluate the effectiveness of this program and to inform strategies to increase the successful implementation and further dissemination of this intervention.


Subject(s)
Cancer Survivors/education , Gardening/education , Horticultural Therapy/methods , Mentors , Vegetables , Aged , Aged, 80 and over , Cancer Survivors/psychology , Diet, Healthy/statistics & numerical data , Exercise , Female , Healthy Lifestyle , Horticultural Therapy/psychology , Humans , Male , Middle Aged , New Mexico , Pilot Projects , Quality of Life
4.
BMC Cancer ; 21(1): 643, 2021 May 30.
Article in English | MEDLINE | ID: mdl-34053445

ABSTRACT

PURPOSE: Exercise is efficacious for people living after a cancer diagnosis. However, implementation of exercise interventions in real-world settings is challenging. Implementation outcomes are defined as 'the effects of deliberate and purposive actions to implement new treatments, practices, and services'. Measuring implementation outcomes is a practical way of evaluating implementation success. This systematic review explores the implementation outcomes of exercise interventions evaluated under real-world conditions for cancer care. METHODS: Using PRISMA guidelines, an electronic database search of Medline, PsycInfo, CINAHL, Web of Science, SportsDiscus, Scopus and Cochrane Central Registry of Controlled Trials was conducted for studies published between January 2000 and February 2020. The Moving through Cancer registry was hand searched. The Implementation Outcomes Framework guided data extraction. Inclusion criteria were adult populations with a cancer diagnosis. Efficacy studies were excluded. RESULTS: Thirty-seven articles that described 31 unique programs met the inclusion criteria. Implementation outcomes commonly evaluated were feasibility (unique programs n = 17, 54.8%) and adoption (unique programs n = 14, 45.2%). Interventions were typically delivered in the community (unique programs n = 17, 58.6%), in groups (unique programs n = 14, 48.3%) and supervised by a qualified health professional (unique programs n = 14, 48.3%). Implementation outcomes infrequently evaluated were penetration (unique programs n = 1, 3.2%) and sustainability (unique programs n = 1, 3.2%). CONCLUSIONS: Exercise studies need to measure and evaluate implementation outcomes under real-world conditions. Robust measurement and reporting of implementation outcomes can help to identify what strategies are essential for successful implementation of exercise interventions. IMPLICATIONS FOR CANCER SURVIVORS: Understanding how exercise interventions can be successful implemented is important so that people living after a cancer diagnosis can derive the benefits of exercise.


Subject(s)
Cancer Survivors/education , Exercise Therapy/organization & administration , Health Plan Implementation , Health Promotion/organization & administration , Neoplasms/rehabilitation , Cancer Survivors/psychology , Exercise Therapy/education , Exercise Therapy/psychology , Humans , Neoplasms/psychology , Survivorship
5.
Cancer Nurs ; 44(2): 125-135, 2021.
Article in English | MEDLINE | ID: mdl-31743151

ABSTRACT

BACKGROUND: Health-related exercise and education program for cancer patients are necessary to provide physical and emotional support to enable efficient and appropriate self-management at home. OBJECTIVE: This study aimed to investigate the effects of a tripod approach including physical exercise, education, and emotional support program on illness stress, health promotion lifestyle, hope, and resilience in cancer patients. INTERVENTIONS/METHODS: This was a quasi-experimental repeated-measures study using a pre-post design with a nonhomogeneous control group. A total of 72 cancer patients (experimental group = 37, control group = 35) who were currently receiving treatment and staying at home were enrolled. RESULTS: The experimental group showed significantly lower illness stress scores (F = 17.35, P < .001) and increase in health promotion lifestyle scores (F = 4.05, P = .048) compared with the control group, especially social relationships (t = 1.85, P = .073) and stress management (t = 2.30, P = .027). However, there were no effects on hope and resilience. Also, illness stress showed significant changes after 6 weeks (t = -3.35, P = .001) and after 10 weeks (t = -5.04, P < .001). Overall health promotion lifestyle showed changes after 10 weeks (t = 2.25, P = .030), with meaning of life (t = 2.57, P = .014), stress management (t = 2.30, P = .027), and medical behaviors (t = 2.46, P = .019) especially showing significant changes. CONCLUSIONS: The results showed that the tripod approach had positive effects on illness stress and health promotion lifestyle of cancer patients staying at home. Further study to improve positive emotions such as hope and resilience is needed. IMPLICATIONS FOR PRACTICE: Based on our findings, combining nursing intervention with physical exercise, education, and emotional support could be incorporated into cancer patients in community and early survivorship care plans in clinical practice.


Subject(s)
Health Promotion/methods , Neoplasms/psychology , Adult , Aged , Cancer Survivors/education , Cancer Survivors/psychology , Exercise Therapy , Female , Healthy Lifestyle , Hope , Humans , Male , Middle Aged , Neoplasms/nursing , Neoplasms/therapy , Patient Education as Topic/methods , Resilience, Psychological , Stress, Psychological/prevention & control
6.
Support Care Cancer ; 29(1): 169-177, 2021 Jan.
Article in English | MEDLINE | ID: mdl-32328773

ABSTRACT

PURPOSE: There is a growing population of survivors of childhood cancer at risk for late effects that can affect their overall quality of life. There is evidence that they have inadequate knowledge about their diagnosis, treatment, and subsequent late effects. A randomized study was conducted to determine if a portable credit card-sized plastic card, the "Survivor Healthcare Passport," improved the survivor's knowledge of diagnosis, treatment, risks, and follow-up care. The study included 126 patients 2 years post-end of cancer treatment and took place at the UCSF Benioff Children's Hospital Survivorship Clinic. METHODS: Patients attending the UCSF Survivorship clinic were randomized to receive or not receive a passport at their first survivorship clinic visit. Each groups' knowledge of diagnosis, treatment history, and follow-up needs was assessed at three time points with a questionnaire. RESULTS: Patients who received the passport distributed immediately after their visit demonstrated improved and sustained knowledge compared with survivors who did not receive the passport until more than 4 months later. CONCLUSION: Enhancing a survivor's knowledge is an important endeavor and a continual challenge for practitioners in survivorship clinics. This portable educational tool helps improve patient knowledge of their cancer, therapy, and follow-up needs. By providing a tangible card that is quick and easy to access, survivors have access to their treatment late effects and follow-up needs that can also be shared with other healthcare providers.


Subject(s)
Cancer Survivors/education , Cancer Survivors/psychology , Health Knowledge, Attitudes, Practice , Neoplasms/therapy , Quality of Life/psychology , Adult , Aftercare , Ambulatory Care/statistics & numerical data , Child , Child, Preschool , Delivery of Health Care , Female , Humans , Male , Surveys and Questionnaires , Survivorship
7.
PLoS One ; 15(12): e0243998, 2020.
Article in English | MEDLINE | ID: mdl-33326475

ABSTRACT

The treatment of children with posterior fossa brain tumours (PFBT) impacts their long term functional and imaging outcomes. This study aimed to evaluate academic achievement correlated with long-term sequelae after different PFBT treatment modalities. The study cohort consisted of 110 survivors (median age at diagnosis 10.1 years and median time of follow up 13.2 years) who completed hearing questionnaires, neurological assessment and MRI of the brain ≥5 years after the end of treatment. There were three treatment groups. A cisplatin group which underwent cisplatin chemotherapy, radiotherapy and surgery (medulloblastoma N = 40), a radiotherapy group which underwent radiotherapy and surgery (astrocytoma/ependymoma N = 30), and a surgery group (astrocytoma N = 40). Academic achievement was correlated to the age at diagnosis, ototoxicity, Karnofsky score (KS), and MRI findings (Fazekas Score (FS)- treatment related parenchymal changes). For a modelled age at diagnosis of five years, the cisplatin group had lower academic achievements compared to the radiotherapy (p = 0.028) and surgery (p = 0.014) groups. Academic achievements evaluated at a modelled age of 10 years at diagnosis did not significantly differ among the treatment groups. The cisplatin group exhibited a higher occurrence of ototoxicity than the radiotherapy (p<0.019) and surgery groups (p<0.001); however, there was no correlation between ototoxicity and academic achievements (p = 0.722) in older age at diagnosis. The radiotherapy group exhibited lower KS than the surgery group (p<0.001). KS significantly influenced academic achievements in all groups (p<0.000). The cisplatin group exhibited higher FS than the surgery group (p<0.001) while FS did not correlate with academic achievement (p = 0.399). Older age is a protective factor for academic achievements irrespective of a treatment modality.


Subject(s)
Academic Success , Cancer Survivors/education , Glioma/epidemiology , Infratentorial Neoplasms/epidemiology , Adolescent , Age Factors , Antineoplastic Agents/adverse effects , Child , Cisplatin/adverse effects , Cisplatin/therapeutic use , Female , Glioma/surgery , Glioma/therapy , Humans , Infratentorial Neoplasms/surgery , Infratentorial Neoplasms/therapy , Male , Neurosurgical Procedures/adverse effects , Radiotherapy/adverse effects
8.
PLoS One ; 15(10): e0239967, 2020.
Article in English | MEDLINE | ID: mdl-33002084

ABSTRACT

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.


Subject(s)
Brain Neoplasms/psychology , Cancer Survivors/education , Leukemia/psychology , Parents/psychology , Social Adjustment , Adult , Aged , Attitude , Brain Neoplasms/rehabilitation , Cancer Survivors/psychology , Child , Female , Humans , Leukemia/rehabilitation , Male , Middle Aged , Schools/statistics & numerical data , Surveys and Questionnaires
10.
Cancer Nurs ; 43(4): 259-268, 2020.
Article in English | MEDLINE | ID: mdl-32467430

ABSTRACT

BACKGROUND: Underrepresented minority (URM) cancer survivors experience disparities in mortality and quality of life, compared with non-Hispanic whites. Disparities are associated with poor social determinants of health, enhanced by mistrust of the healthcare system. Trust can be facilitated by provider-patient racial/ethnic concordance, yet URM survivors rarely experience concordance. Effective health communication is needed for this vulnerable population. OBJECTIVE: The aim of this study was to systematically review evidence on the composition and utility of health education videos among adult URM survivors. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, Cochrane, PsycInfo, and CINAHL databases. Articles that included adult URM cancer survivor samples and either described or tested a video intervention aimed to improve health outcomes were included. Two researchers independently screened articles for inclusion and quality appraisal and abstracted and synthesized relevant data to identify themes. RESULTS: Eight articles, detailing 7 independent studies, met inclusion criteria. Quality appraisal of the included studies was fair to good. Six themes were identified: (1) video development with stakeholders, (2) focus on designing culturally appropriate videos, (3) in-clinic video delivery, (4) video intervention effects, (5) provider and URM survivors support video interventions, and (6) building trust through personal stories. CONCLUSIONS: Video interventions are well received by URMs and improve outcomes yet are underutilized. More rigorous studies are warranted to develop best practices for video development and application. IMPLICATIONS FOR PRACTICE: Videos serve as an easy, effective tool to achieve favorable outcomes in the care of URM survivors.


Subject(s)
Cancer Survivors/education , Ethnicity/education , Health Education/methods , Minority Groups/education , Videotape Recording , Adult , Cancer Survivors/statistics & numerical data , Ethnicity/statistics & numerical data , Humans , Minority Groups/statistics & numerical data , Randomized Controlled Trials as Topic
11.
Contemp Clin Trials ; 92: 105998, 2020 05.
Article in English | MEDLINE | ID: mdl-32289471

ABSTRACT

Breast cancer survivors with type 2 diabetes are at high risk for cancer recurrence, serious health complications, more severe symptoms, psychological distress, and premature death relative to breast cancer survivors without diabetes. Maintaining glycemic control is critical for decreasing symptoms and preventing serious health problems. Many breast cancer survivors with type 2 diabetes have difficulty maintaining diabetes self-management behaviors and achieving glycemic control. Both cancer and diabetes-related symptoms (e.g., physical symptoms and psychological distress) are often barriers to engaging in diabetes self-management strategies. This study evaluates a novel diabetes coping skills training (DCST) intervention for improving breast cancer survivors' abilities to manage symptoms and adhere to recommended diabetes self-management behaviors. The telephone-based DCST protocol integrates three key theory-based strategies: coping skills training for managing symptoms, adherence skills training, and healthy lifestyle skills training. A randomized clinical trial will test the DCST intervention plus diabetes education by comparing it to diabetes education alone. Symptoms, distress, diabetes self-management behaviors, and self-efficacy will be assessed at baseline and 3, 6, and 12 months. Glycosylated hemoglobin (HbA1c) will be assessed at baseline, 6, and 12 months. This study addresses a critical gap in the care of breast cancer survivors by evaluating a novel behavioral intervention to improve the management of symptoms, adherence, and glycemic control in breast cancer survivors with type 2 diabetes. Special considerations for this medically underserved population are also provided. The findings of this study could lead to significant improvements in clinical care and beneficial outcomes for breast cancer survivors. Trials registration: ClinicalTrials.gov, NCT02970344, registered 11/22/2016.


Subject(s)
Breast Neoplasms/epidemiology , Cancer Survivors/education , Diabetes Mellitus, Type 2/epidemiology , Diabetes Mellitus, Type 2/therapy , Healthy Lifestyle , Self-Management/education , Adaptation, Psychological , Breast Neoplasms/psychology , Diabetes Mellitus, Type 2/psychology , Female , Glycated Hemoglobin , Health Behavior , Humans , Research Design , Self Efficacy , Stress, Psychological/psychology , Stress, Psychological/therapy
12.
Contemp Clin Trials ; 92: 106001, 2020 05.
Article in English | MEDLINE | ID: mdl-32304828

ABSTRACT

BACKGROUND: African Americans (AA) and socioeconomic status (SES) disadvantaged older breast cancer survivors (BCS) are more likely to experience poor functional and health outcomes. However, few studies have evaluated the putative beneficial effects of exercise on these outcomes in older racial minority and SES-disadvantaged BCS. METHODS: This is a mixed-methods study that includes a randomized-controlled trial, "IMPROVE", to evaluate a group-based exercise intervention compared to a support group program in older BCS, followed by post-intervention semi-structured interviews to evaluate the intervention. The trial aims to recruit 220 BCS with 55 in each of four strata defined by race (AA versus Non-Hispanic Whites) and SES (disadvantaged vs. non-disadvantaged). Participants are ≥65 years old and within five years of treatment completion for stage I-III breast cancer. Participants are randomized to a 52-week, three sessions/week, one-hour/session, moderate intensity aerobic and resistance group exercise intervention, (n = 110) or a 52-week, one hour/week, support group intervention [attention-control arm], (n = 110). The first 20 weeks of both programs are supervised and the last 32 weeks, unsupervised. The primary outcome is the change in Short Physical Performance Battery (SPPB) Scores at 20 weeks from baseline, between the two arms. Secondary outcomes include change in SPPB scores at 52 weeks, change in body composition and biomarkers, at 20 and 52 weeks from baseline, between arms. DISCUSSION: Results of the trial may contribute to a better understanding of factors associated with recruitment, and acceptability, and will inform future exercise programs to optimally improve health outcomes for older BCS.


Subject(s)
Black or African American/education , Breast Neoplasms/ethnology , Cancer Survivors/education , Exercise , Health Education/organization & administration , White People/education , Aged , Female , Health Status , Humans , Physical Functional Performance , Quality of Life , Research Design , Self-Help Groups , Socioeconomic Factors
13.
J Cancer Educ ; 35(4): 743-750, 2020 08.
Article in English | MEDLINE | ID: mdl-31001740

ABSTRACT

This study used heart rate variability (HRV) to monitor levels of cancer-related fatigue (CRF) and quality of life (QOL) of cancer survivors subjected to program measures at different psychosomatic or functional levels. A longitudinal study was conducted at a cancer center in Taiwan. Fifty-two cancer survivals were randomly assigned to either the mindfulness group (n = 25) or the Qigong group (n = 27). Both groups received a 12-week mindfulness and Qigong programs, respectively. Improvements in CRF, QOL, and HRV after a 12-week program and at the 3-month follow-up point. For the long-term effects in both mindfulness and Qigong groups, CRF showed a significant downward trend (p < 0.05), but a significant upward trend was observed in HRV (p < 0.001). Mindfulness and Qigong exhibited different effectiveness in individuals, indicating that the mental and physical aspects of health are equally essential and should be addressed in a complementary combination. These findings are worthy of being shared with cancer survivors to benefit their physical and mental well-being. We suggest that healthcare professionals incorporate mindfulness and Qigong in cancer survivors' daily life as means to encourage lifestyle changes for improving their health.


Subject(s)
Cancer Survivors/education , Health Promotion/methods , Life Style , Mental Health , Mindfulness/methods , Neoplasms/therapy , Quality of Life , Adult , Aged , Cancer Survivors/psychology , Female , Humans , Longitudinal Studies , Male , Middle Aged , Neoplasms/epidemiology , Neoplasms/psychology , Taiwan/epidemiology
14.
Contemp Clin Trials ; 89: 105915, 2020 02.
Article in English | MEDLINE | ID: mdl-31862436

ABSTRACT

BACKGROUND: Long-term survival for children diagnosed with cancer exceeds 80%. Notably, premature cardiovascular disease has become the leading non-cancer cause of late mortality among these survivors. METHODS/DESIGN: This randomized controlled trial (RCT; NCT03104543) focuses on adult participants in the Childhood Cancer Survivor Study identified as high risk for ischemic heart disease or heart failure due to their cancer treatment. Participants undergo a home-based evaluation of blood pressure and laboratory tests to determine the prevalence of undiagnosed and/or undertreated hypertension, dyslipidemia, and diabetes. Those with abnormal values are then enrolled in an RCT to test the efficacy of a 12-month personalized, remotely delivered survivorship care plan (SCP) intervention designed to reduce undertreatment of these three target conditions. The intervention approximates a clinical encounter and is based on chronic disease self-management strategies. RESULTS: With a goal of 750, currently 342 out of 742 eligible participants approached have enrolled (46.1%). Initially, we randomized participants to different recruitment strategies, including shorter approach packets and a tiered consent, but did not find significant differences in participation rates (40.7% to 42.9%; p = .95). Subsequently, slightly greater participation was seen with larger upfront unconditional incentive checks ($50 vs. $25: 50.7% vs. 44.1%; p = .10). Overall, the financial impact of the $50 upfront incentive was cost neutral, and possibly cost-saving, vs. a $25 upfront incentive. CONCLUSION: The overall study will determine if a National Academy of Medicine-recommended SCP intervention can improve cardiovascular outcomes among long-term survivors of childhood cancer. Modifications to the recruitment strategy may improve participation rates over time.


Subject(s)
Cancer Survivors/education , Cardiovascular Diseases/diagnosis , Cardiovascular Diseases/therapy , Health Promotion/organization & administration , Primary Health Care/organization & administration , Blood Pressure , Cardiovascular Diseases/drug therapy , Chronic Disease , Diabetes Mellitus/diagnosis , Diabetes Mellitus/drug therapy , Dyslipidemias/diagnosis , Dyslipidemias/drug therapy , Female , Humans , Hypertension/diagnosis , Hypertension/drug therapy , Male , Remote Consultation/methods , Research Design , Self-Management , Socioeconomic Factors
15.
Complement Med Res ; 27(4): 222-229, 2020.
Article in English | MEDLINE | ID: mdl-31743921

ABSTRACT

BACKGROUND: The use of complementary and alternative medicine (CAM) among cancer patients is estimated to be approximately 40%. In self-help groups there is a need for information about CAM. This pilot study aimed to develop and evaluate a CAM educational program for cancer self-help groups. METHODS: The educational program was developed in cooperation with health professionals and representatives of cancer self-help organizations. Participants were trained to increase their knowledge about CAM, to reflect their user behavior, and to use evidence-based information. Self-help group leaders were educated along the curriculum and motivated to carry out the course in their groups. Using questionnaires it was evaluated in terms of acceptance, feasibility, and satisfaction by participants. RESULTS: A total of 171 self-help group leaders were educated. In a pilot run 7 implemented the course in their groups, with a total of 70 participants. Most of them (n = 60, 85.7%) appreciated its contents and material and would recommend it. Overall acceptance and satisfaction were high. CONCLUSIONS: The educational program was implemented successfully in a small sample and showed positive results for acceptance and feasibility. In addition to consultation by experts, it can be a good option to inform cancer survivors about CAM.


Subject(s)
Cancer Survivors/education , Complementary Therapies/education , Evidence-Based Medicine , Health Knowledge, Attitudes, Practice , Neoplasms/therapy , Self-Help Groups , Adult , Aged , Aged, 80 and over , Female , Humans , Information Seeking Behavior , Male , Middle Aged , Pilot Projects , Program Development , Program Evaluation
16.
BMJ Open ; 9(9): e032510, 2019 09 30.
Article in English | MEDLINE | ID: mdl-31575584

ABSTRACT

OBJECTIVES: To review the nature and scope of apps targeting individuals living with and beyond cancer. DESIGN: Scoping review, searching the two largest app stores, Google Play and Apple's App store. App descriptions were exported verbatim, and summarised descriptively, thematically and by content coding. RESULTS: We included 151 apps targeting individuals living with and beyond cancer. Most targeted all cancer types (n=89, 58.9%) or breast cancer (n=22, 14.6%) and originated in the USA (n=68, 45.0%). The country of origin was unclear for 31 (20.5%) apps. Most apps were developed by commercial companies/private individuals (n=64, 43%) or non-profit organisations (n=30, 19.9%) and marketed apps in terms of fighting metaphors, navigating a journey and becoming empowered to take control.App content could be summarised under five main categories: (1) imparting information about cancer; (2) planning and organising cancer care; (3) interacting with others (including others affected by cancer and healthcare professionals); (4) enacting management strategies and adjusting to life with or beyond cancer and (5) getting feedback about cancer management, for example, by sharing self-monitoring reports with professionals. We found some apps describing 'cures' for cancer or selling products, such as alkaline waters to cancer survivors. CONCLUSIONS: Apps are currently available via on-line stores that cover a large spectrum of cancer survivorship activities. The effects of such apps on clinical consultations, patient work/burden and clinical outcomes merit further attention. Most apps are developed by commercial organisations, and promises of empowerment in the 'fight' against cancer are tempered by the potential for exaggerated claims and exploitation.


Subject(s)
Cancer Survivors/education , Mobile Applications , Patient Education as Topic , Access to Information , Humans
17.
J Health Commun ; 24(10): 749-760, 2019.
Article in English | MEDLINE | ID: mdl-31543072

ABSTRACT

Communicating about clinical trials and medical research is challenging. An appropriate communication is essential to reduce some of the barriers associated with poor patients' enrollment in clinical trials and with patients' uninformed consent or uninformed refusal. An experiment was conducted to assess the effects of educational animations compared to brochures with and without visuals, and with the materials currently used by the NIH. These materials focused on explaining placebos, randomization, the steps necessary to enroll in a clinical trial, and how and by who patients' protection is ensured. A total of 1194 cancer patients and survivors completed this 4 by 4 experiment through a Qualtrics panel. The findings showed that animations improved participants knowledge about and attitudes toward clinical trials and were more effective than brochures presenting information from the NIH, especially for those individuals with low motivation and low ability to comprehend health-related information. Several evidence-based theoretical explanations of the functioning of animations are provided.


Subject(s)
Cancer Survivors/education , Clinical Trials as Topic , Computer Graphics , Neoplasms/therapy , Patient Education as Topic/methods , Adolescent , Adult , Aged , Aged, 80 and over , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Pamphlets , Patient Selection , Young Adult
19.
Support Care Cancer ; 27(8): 2757-2759, 2019 Aug.
Article in English | MEDLINE | ID: mdl-31001693

ABSTRACT

PURPOSE: The implementation of a new online conference tool, with the goal of providing competent answers, information, and support from experts in their fields, about diagnosis, treatment, and rehabilitation in breast cancer patients. METHODS: The implementation process and data of the first online conference are described. RESULTS: Following the idea and initiative of a breast cancer survivor, and under the umbrella of a leading oncologist in breast cancer treatment, and with the cooperation of further leading experts in the fields, plus their therapeutic teams, the new online conference SURVIVA 2018 was implemented as an innovative platform-free of charge, online, and with easy and anonymous access-to provide breast cancer survivors with in-depth information and help from the leading Austrian experts in their fields. This first online conference for German-speaking breast cancer survivors is an innovative and modern concept, which seems to have been very well accepted. CONCLUSION: This concept could also be of interest to survivors of other cancer entities.


Subject(s)
Breast Neoplasms/rehabilitation , Cancer Survivors/education , Congresses as Topic/organization & administration , Information Dissemination/methods , Internet , Medical Oncology/organization & administration , Austria/epidemiology , Breast Neoplasms/therapy , Cancer Survivors/statistics & numerical data , Congresses as Topic/standards , Expert Testimony , Female , Humans , Inventions/trends , Patient Education as Topic/methods , Self-Help Groups
20.
Acta Oncol ; 58(5): 682-689, 2019 May.
Article in English | MEDLINE | ID: mdl-30862228

ABSTRACT

Background: Rehabilitation aims to improve function, but the effects of different programs are not clear. The aims of the present study were to: (1) compare the level of fatigue and health-related quality of life (HRQOL) of cancer survivors admitted to a one-week inpatient educational program (IEP) to the general population (NORMS), (2) examine changes in fatigue, HRQOL and physical activity after the IEP and (3) examine the proportions of survivors for female and male separately with clinically relevant improvement (>10% of maximum scale). Methods: Cancer survivors ≥18 years, diagnosed with breast-, prostate- or gastrointestinal cancer within the last 10 years, about to attend a one-week IEP were invited to an observational study with a pre-post design. The IEP included lectures, group discussions and physical activity. The participants completed a questionnaire on the arrival day (T0) and three months after the stay (T1). Fatigue was assessed by the Fatigue Questionnaire and HRQOL by Short Form-36. Results: Compared to NORMS, both female and male participants had significantly higher mean levels of fatigue and poorer HRQOL at T0 and T1. From T0 to T1, among all participants physical fatigue was reduced from 12.6 (SD 3.9) to 11.8 (SD 3.8; p < .001), mental fatigue from 6.3 (SD 2.2) to 6.0 (SD 2.2; p = .044) and total fatigue from 19.0 (SD 5.3) to 17.8 (SD 5.4; p = .001). Among female participants, 30% experienced clinically relevant improvement in physical fatigue, 28% in total fatigue and 36% in general health. Of male participants, 31% displayed a clinically relevant improvement in role limitations physical. Conclusion: Participants in the IEP reduced their levels of fatigue and improved aspects of HRQOL, more often observed among female participants than among males. Because of the lack of a control group it is not possible to conclude whether the changes were due to the IEP.


Subject(s)
Cancer Survivors/education , Exercise , Fatigue , Quality of Life , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Surveys and Questionnaires
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