Dataset Information

Development and pilot testing of a psychosocial intervention program for young breast cancer survivors.

ABSTRACT: To describe the development, pilot testing, and dissemination of a psychosocial intervention addressing concerns of young breast cancer survivors (YBCS).Intervention development included needs assessment with community organizations and interviews with YBCS. Based on evidence-based models of treatment, the intervention included tools for managing anxiety, fear of recurrence, tools for decision-making, and coping with sexuality/relationship issues. After pilot testing in a university setting, the program was disseminated to two community clinical settings.The program has two distinct modules (anxiety management and relationships/sexuality) that were delivered in two sessions; however, due to attrition, an all day workshop evolved. An author constructed questionnaire was used for pre- and post-intervention evaluation. Post-treatment scores showed an average increase of 2.7 points on a 10 point scale for the first module, and a 2.3 point increase for the second module. Qualitative feedback surveys were also collected. The two community sites demonstrated similar gains among their participants.The intervention satisfies an unmet need for YBCS and is a possible model of integrating psychosocial intervention with oncology care.This program developed standardized materials which can be disseminated to other organizations and potentially online for implementation within community settings.

SUBMITTER: Ahmed K

PROVIDER: S-EPMC4779394 | biostudies-other | 2016 Mar

REPOSITORIES: biostudies-other

ACCESS DATA

Publications

Development and pilot testing of a psychosocial intervention program for young breast cancer survivors.

Ahmed Kauser K Marchand Erica E Williams Victoria V Coscarelli Anne A Ganz Patricia A PA

Patient education and counseling 20151009 3

<h4>Objective</h4>To describe the development, pilot testing, and dissemination of a psychosocial intervention addressing concerns of young breast cancer survivors (YBCS).<h4>Methods</h4>Intervention development included needs assessment with community organizations and interviews with YBCS. Based on evidence-based models of treatment, the intervention included tools for managing anxiety, fear of recurrence, tools for decision-making, and coping with sexuality/relationship issues. After pilot te ...[more]

PMID: 26456635

Similar Datasets

Project description:ImportanceYoung women with breast cancer are increasingly choosing bilateral mastectomy (BM), yet little is known about short-term and long-term physical and psychosocial well-being following surgery in this population.ObjectiveTo evaluate the differential associations of surgery with quality of life (QOL) and psychosocial outcomes from 1 to 5 years following diagnosis.Design, setting, and participantsCohort study.SettingMulticenter, including academic and community hospitals in North America.ParticipantsWomen age ≤40 when diagnosed with Stage 0-3 with unilateral breast cancer between 2006 and 2016 who had surgery and completed QOL and psychosocial assessments.Exposures (for observational studies)Primary breast surgery including breast-conserving surgery (BCS), unilateral mastectomy (UM), and BM.Main outcomes and measuresPhysical functioning, body image, sexual health, anxiety and depressive symptoms were assessed in follow-up.ResultsOf 826 women, mean age at diagnosis was 36.1 years; most women were White non-Hispanic (86.7%). Regarding surgery, 45% had BM, 31% BCS, and 24% UM. Of women who had BM/UM, 84% had reconstruction. While physical functioning, sexuality, and body image improved over time, sexuality and body image were consistently worse (higher adjusted mean scores) among women who had BM vs BCS (body image: year 1, 1.32 vs 0.64; P < .001; year 5, 1.19 vs 0.48; P < .001; sexuality: year 1, 1.66 vs 1.20, P < .001; year 5, 1.43 vs 0.96; P < .001) or UM (body image: year 1, 1.32 vs 1.15; P = .06; year 5, 1.19 vs 0.96; P = .02; sexuality: year 1, 1.66 vs 1.41; P = .02; year 5, 1.43 vs 1.09; P = .002). Anxiety improved across groups, but adjusted mean scores remained higher among women who had BM vs BCS/UM at 1 year (BM, 7.75 vs BCS, 6.94; P = .005; BM, 7.75 vs UM, 6.58; P = .005), 2 years (BM, 7.47 vs BCS, 6.18; P < .001; BM, 7.47 vs UM, 6.07; P < .001) and 5 years (BM, 6.67 vs BCS, 5.91; P = .05; BM, 6.67 vs UM, 5.79; P = .05). There were minimal between-group differences in depression levels in follow-up.Conclusions and relevanceWhile QOL improves over time, young breast cancer survivors who undergo more extensive surgery have worse body image, sexual health, and anxiety compared with women undergoing less extensive surgery. Ensuring young women are aware of the short-term and long-term effects of surgery and receive support when making surgical decisions is warranted.

Project description:Latinas are less likely to participate in genetic counseling (GC) and genetic testing (GT) than non-Hispanic Whites. A multisite, randomized pilot study tested a culturally targeted educational intervention to increase uptake of GC/GT among Latina breast cancer (BC) survivors (N = 52). Participants were recruited in Tampa, FL and Ponce, PR and randomized to: (a) fact sheet about BC survivorship (control) or (b) a culturally targeted educational booklet about GC/GT (intervention). Participants in the intervention condition were also offered no-cost telephone GC followed by free GT with mail-based saliva sample collection. Participants self-reported hereditary breast and ovarian cancer (HBOC) knowledge and emotional distress at baseline and 1- and 3-month follow-ups. We used logistic regression to examine differences in GC/GT uptake by study arm (primary outcome) and repeated measures ANOVA to examine the effects of study arm and time on HBOC knowledge and emotional distress (secondary outcomes). Compared to the control arm, intervention participants were more likely to complete GC (ORIntervention = 13.92, 95% CI = 3.06-63.25, p < .01) and GT (ORIntervention = 12.93, 95% CI = 2.82-59.20, p < .01). Study site did not predict uptake of GC (p = .08) but Ponce participants were more likely to complete GT (ORPonce = 4.53, 95% CI = 1.04-19.72, p = .04). ANOVAs demonstrated an increase in HBOC knowledge over time across both groups (F(2,88) = 12.24, p < .01, ηp 2 = 0.22). We also found a significant interaction of study arm and time, such that intervention participants demonstrated a greater and sustained (to the 3-month follow-up) increase in knowledge than control participants (F(2,88) = 3.66, p = .03, ηp 2 = 0.08). No other main or interaction effects were significant (all p's> .15). Study findings demonstrate the potential of our culturally targeted print intervention. Lessons learned from this multisite pilot study for enhancing GC/GT in Latinas include the need to attend to both access to GC/GT and individual factors such as attitudes and knowledge.

Project description:BACKGROUND:Distress is prevalent in cancer survivors. Stress management interventions can reduce distress and improve quality of life for cancer patients, but many people with cancer are unfortunately not offered or able to attend such in-person stress management interventions. OBJECTIVE:The objective of this study was to develop an evidence-based stress management intervention for patients living with cancer that can be delivered electronically with wide reach and dissemination. This paper describes the design and development process of a technology-based stress management intervention for cancer survivors, including the exploration phase, intervention content development, iterative software development (including design, development, and formative evaluation of low- and high-level prototypes), and security and privacy considerations. METHODS:Design and development processes were iterative and performed in close collaboration with key stakeholders (N=48). In the exploration phase, identifying needs and requirements for the intervention, 28 participants gave input, including male and female cancer survivors (n=11) representing a wide age range (31-81 years) and cancer diagnoses, healthcare providers (n=8) including psychosocial oncology experts, and eHealth experts (n=9) including information technology design and developers. To ensure user involvement in each phase various user-centered design and service design methods were included, such as interviews, usability testing, and think aloud processes. Overall, participants were involved usability testing in the software development and formative evaluation phase, including cancer survivors (n=6), healthy volunteers (n=7), health care providers (n=2), and eHealth experts (n=5). Intervention content was developed by stress management experts based on well-known cognitive behavioral stress management strategies and adjusted to electronic format through multiple iterations with stakeholders. Privacy and security issues were considered throughout. RESULTS:The design and development process identified a variety of stakeholder requirements. Cancer survivors preferred stress management through a mobile app rather than through a personal computer (PC) and identified usefulness, easy access, user friendliness, use of easily understandable language, and many brief sections rather than longer ones as important components of the intervention. These requirements were also supported by recommendations from health care providers and eHealth experts. The final intervention was named StressProffen and the hospital Privacy and Security Protection Committee was part of the final intervention approval to also ensure anchoring in the hospital organization. CONCLUSIONS:Interventions, even evidence-based, have little impact if not actively used. This study illustrates how user-centered design and service design can be applied to identify and incorporate essential stakeholder aspects in the entire design and development process. In combination with evidence-based concepts, this process facilitated development of a stress management intervention truly designed for the end users, in this case, cancer survivors. TRIAL REGISTRATION:ClinicalTrials.gov NCT02939612; https://clinicaltrials.gov/ct2/show/NCT02939612 (Archived at WebCite at http://www.webcitation.org/71l9HcfcB).

Dataset Information

Development and pilot testing of a psychosocial intervention program for young breast cancer survivors.

Publications

Development and pilot testing of a psychosocial intervention program for young breast cancer survivors.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets