Stakeholder-Identified Interventions to Address Cancer Survivors' Psychosocial Needs after Completing Treatment.
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ABSTRACT:
SUBMITTER: Murnaghan S
PROVIDER: S-EPMC8700656 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundInternet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches.ObjectiveThis study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship.MethodsAll posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest.ResultsA total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included "family," "hope," and "help." Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), "sleep" and "work," were included in the keyword list that we independently devised.ConclusionsWeb-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations.
| S-EPMC9533206 | biostudies-literature
Project description:ObjectiveGlobal efforts to implement national ehealth strategies have occurred, yet specific telemedicine implementations have fallen behind. A weakness inherent within many, perhaps most, national ehealth strategies, including Botswana's - is a lack of telemedicine focus. This is despite its potential to address many current healthcare system needs. The development of a telemedicine-specific strategy, to complement the existing ehealth strategy, has been proposed. This paper reports on an emulated process to determine prioritised health needs, identify broad solutions, consider ehealth and then telemedicine solutions, and prioritise these as insight for telemedicine-specific strategy development.MethodsThe eHealth Strategy Development Framework (eHSDF) was adopted and steps 5-7 were emulated. Key informants participated in telephone-based semi-structured interviews in November 2020, using a key informant interview guide. Participants were asked specific questions related to national health needs, proposed solutions, and prioritisation. The interviews were recorded and transcribed for analysis.ResultsEleven key informants identified the top five perceived health issues as human resource shortages, congestion and overcrowding, prevalence of diseases, poor referral system, and lack of diagnostic and case management skills. Solutions were proposed, some of which included: Telehealth (including telemedicine), health informatics, and elearning. Telemedicine solutions included: a health professional help desk, teleconsultations, and apps for specialist referral. eLearning solutions were training, mentoring, and continuing professional development.ConclusionA telemedicine-specific strategy, addressing the identified health issues and aligned to the existing national ehealth strategy, would provide the required focus to enable the development and deployment of telemedicine activities in the country.
| S-EPMC9158401 | biostudies-literature
Project description:Patients who have survived malignant melanoma for more than five years may lack the opportunity to talk about their burden. As a consequence their psychosocial care needs remain undetected and available supportive interventions may not be utilised. Therefore, the psychosocial burden of this patient group needs to be assessed using specific screening instruments. The aim of this study was to investigate the psychosocial burden of long-term melanoma survivors, their psychosocial care needs and the determinants of these needs. We wanted to find out if the use of professional support corresponds to the care needs defined by experts. Using the cancer registry of Rhineland-Palatinate, melanoma patients diagnosed at least 5 years before the survey were contacted by physicians. N = 689 former patients completed the Hornheide Questionnaire (short form HQ-S) to identify psychosocial support need (scale cut off ≥ 16 or item-based cut-off score) and the potential psychosocial determinants of these needs. Additionally, they were asked about their utilisation of the professional support system. More than one third (36%) of them was in need for professional psychosocial support. The highest burden scores concerned worry about tumour progression. Younger age (< 50), higher general fatigue, higher symptom burden, lower general health, negative social interactions and unfulfilled information needs were significant predictors of the need for psychosocial intervention. Related to the percentage of survivors identified as 'in need', the professional support system was underused. Further studies should investigate whether using the HQ-S to routinely identify burdened melanoma patients could lead to better fulfilment of their intervention needs, ultimately enhancing health-related quality of life.
| S-EPMC4546620 | biostudies-other
Project description:ObjectiveThis study describes the most common cancer-related health information needs among rural cancer survivors and characteristics associated with reporting more information needs.MethodsRural breast, prostate, and colorectal cancer survivors, two to five years post-diagnosis, identified from an institutional cancer registry, completed a mailed/telephone-administered survey. Respondents were asked about 23 health information needs in eight domains (tests and treatment, side effects and symptoms, health promotion, fertility, interpersonal, occupational, emotional, and insurance). Poisson regression models were used to assess relationships between number of health information needs and demographic and cancer characteristics.ResultsParticipants (n = 170) reported an average of four health information needs, with the most common domains being: side effects and symptoms (58 %), health promotion (54 %), and tests and treatment (41 %). Participants who were younger (compared to 5-year increase, rate ratio [RR] = 1.11, 95 % CI = 1.02-1.21), ethnic minority (RR = 1.89, 95 % CI = 1.17-3.06), less educated (RR = 1.49, 95 % CI = 1.00-2.23), and financially stressed (RR = 1.87, 95 % CI = 1.25-2.81) had a greater number of information needs.ConclusionsYounger, ethnic minority, less educated, and financially strained rural survivors have the greatest need for informational support.Practice implicationsThe provision of health information for rural cancer survivors should consider type of cancer, treatments received, and sociocultural differences to tailor information provided.
| S-EPMC7311274 | biostudies-literature
Project description:PURPOSE:Positive affect has demonstrated unique benefits in the context of health-related stress and is emerging as an important target for psychosocial interventions. The primary objective of this meta-analysis was to determine whether psychosocial interventions increase positive affect in cancer survivors. METHODS:We coded 28 randomized controlled trials of psychosocial interventions assessing 2082 cancer survivors from six electronic databases. We calculated 76 effect sizes for positive affect and conducted synthesis using random effects models with robust variance estimation. Tests for moderation included demographic, clinical, and intervention characteristics. RESULTS:Interventions had a modest effect on positive affect (g =?0.35, 95% CI [0.16, 0.54]) with substantial heterogeneity of effects across studies ([Formula: see text]; I2?=?78%). Three significant moderators were identified: in-person interventions outperformed remote interventions (P =?.046), effects were larger when evaluated against standard of care or wait list control conditions versus attentional, educational, or component controls (P?=?.009), and trials with survivors of early-stage cancer diagnoses yielded larger effects than those with advanced-stage diagnoses (P?=?.046). We did not detect differential benefits of psychosocial interventions across samples varying in sex, age, on-treatment versus off-treatment status, or cancer type. Although no conclusive evidence suggested outcome reporting biases (P =?.370), effects were smaller in studies with lower risk of bias. CONCLUSIONS:In-person interventions with survivors of early-stage cancers hold promise for enhancing positive affect, but more methodological rigor is needed. IMPLICATIONS FOR CANCER SURVIVORS:Positive affect strategies can be an explicit target in evidence-based medicine and have a role in patient-centered survivorship care, providing tools to uniquely mobilize human strengths.
| S-EPMC7330880 | biostudies-literature
Project description:INTRODUCTION:Chemotherapy for breast cancer has been associated with cognitive problems; however, the impact of adjuvant hormone therapy is less clear. No studies have explored provider discussions about cognitive concerns or factors associated with neurocognitive treatment. This study examined cognitive problems, factors associated with having a provider discussion, and receipt of neurocognitive treatment. METHODS:Female breast cancer survivors (N=2,537) from the Sister Study and the Two Sister Study who were at least 1 year post-treatment were surveyed in 2012 about their cancer therapies (confirmed by medical records); cognitive concerns; related provider discussions; and neurocognitive treatment. A total of 2,296 women were included in the current 2014 analysis. Extensive covariate information was also ascertained for predictive multivariate models. RESULTS:The prevalence of self-reported cognitive problems after treatment was 60%. Of those reporting cognitive problems, only 37% had discussed those concerns with a provider and 15% had been treated for cognitive symptoms. The odds of reported cognitive concerns that started during and after treatment were elevated for those who received only hormone therapy and no chemotherapy (OR=1.64, 95% CI=1.15, 2.33); chemotherapy and no hormone therapy (OR=5.63, 95% CI=3.52, 9.00); or both (OR=6.33, 95% CI=4.21, 9.54) compared with those reporting neither treatment. CONCLUSIONS:The high prevalence of cognitive concerns underscores the importance of monitoring breast cancer survivors for potential neurocognitive effects of hormone and chemotherapy, discussions with survivors about those concerns, and treatment referrals. Monitoring changes over time can help to evaluate both psychosocial and neurocognitive care provided for survivors.
| S-EPMC4656130 | biostudies-literature
Project description:This review aimed to identify, evaluate, and synthesize the scientific literature on mobile health (mHealth) interventions to promote physical activity (PA) or reduce sedentary behavior (SB) in cancer survivors. We searched six databases from 2000 to 13 April 2020 for controlled and non-controlled trials published in any language. We conducted best evidence syntheses on controlled trials to assess the strength of the evidence. All 31 interventions included in this review measured PA outcomes, with 10 of them also evaluating SB outcomes. Most study participants were adults/older adults with various cancer types. The majority (n = 25) of studies implemented multicomponent interventions, with activity trackers being the most commonly used mHealth technology. There is strong evidence for mHealth interventions, including personal contact components, in increasing moderate-to-vigorous intensity PA among cancer survivors. However, there is inconclusive evidence to support mHealth interventions in increasing total activity and step counts. There is inconclusive evidence on SB potentially due to the limited number of studies. mHealth interventions that include personal contact components are likely more effective in increasing PA than mHealth interventions without such components. Future research should address social factors in mHealth interventions for PA and SB in cancer survivors.
| S-EPMC8198944 | biostudies-literature
Project description:PurposeBreast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs.MethodsSemi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics.ResultsThere was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding.ConclusionsThis study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.
| S-EPMC8639634 | biostudies-literature
Project description:IntroductionEmergency departments (ED) function as a health and social safety net, regularly taking care of patients with high social risk and need. Few studies have examined ED-based interventions for social risk and need.MethodsFocusing on ED-based interventions, we identified initial research gaps and priorities in the ED using a literature review, topic expert feedback, and consensus-building. Research gaps and priorities were further refined based on moderated, scripted discussions and survey feedback during the 2021 SAEM Consensus Conference. Using these methods, we derived six priorities based on three identified gaps in ED-based social risks and needs interventions: 1) assessment of ED-based interventions; 2) intervention implementation in the ED environment; and 3) intercommunication between patients, EDs, and medical and social systems.ResultsUsing these methods, we derived six priorities based on three identified gaps in ED-based social risks and needs interventions: 1) assessment of ED-based interventions, 2) intervention implementation in the ED environment, and 3) intercommunication between patients, EDs, and medical and social systems. Assessing intervention effectiveness through patient-centered outcome and risk reduction measures should be high priorities in the future. Also noted was the need to study methods of integrating interventions into the ED environment and to increase collaboration between EDs and their larger health systems, community partners, social services, and local government.ConclusionThe identified research gaps and priorities offer guidance for future work to establish effective interventions and build relationships with community health and social systems to address social risks and needs, thereby improving the health of our patients.
| S-EPMC10047718 | biostudies-literature
Project description:ObjectiveThe need for clinical services in U.S. colleges exceeds the supply. Digital Mental health Interventions (DMHIs) are a potential solution, but successful implementation depends on stakeholder acceptance. This study investigated the relevance of DMHIs from students' perspectives.MethodsIn 2020-2021, an online cross-sectional survey using mixed methods was conducted with 479 students at 23 colleges and universities. Respondents reported views and use of standard mental health services and DMHIs and rated the priority of various DMHIs to be offered through campus services. Qualitative data included open-ended responses.FindingsAmong respondents, 91% reported having experienced mental health problems, of which 91% reported barriers to receiving mental health services. Students highlighted therapy and counseling as desired and saw flexible access to services as important. With respect to DMHIs, respondents had the most experience with physical health apps (46%), mental health questionnaires (41%), and mental well-being apps (39%). Most were unaware of or had not used apps or self-help programs for mental health problems. Students were most likely to report the following DMHIs as high priorities: a crisis text line (76%), telehealth (66%), websites for connecting to services (62%), and text/messaging with counselors (62%). They considered a self-help program with coach support to be convenient but some also perceived such services to be possibly less effective than in-person therapy.ConclusionsStudents welcome DMHIs on campus and indicate preference for mental health services that include human support. The findings, with particular focus on characteristics of the DMHIs prioritized, and students' awareness and perceptions of scalable DMHIs emphasized by policymakers, should inform schools looking to implement DMHIs.
| S-EPMC8976123 | biostudies-literature