Telephone versus in-person genetic counseling for hereditary cancer risk: Patient predictors of differential outcomes

2021 ◽  
pp. 1357633X2110522
Author(s):  
Savannah Binion ◽  
Lia J Sorgen ◽  
Beth N Peshkin ◽  
Heiddis Valdimarsdottir ◽  
Claudine Isaacs ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Usual Care ◽  
Perceived Stress ◽  
A Priori ◽  
Decisional Conflict ◽  
Cancer Genetic Counseling ◽  
Patient Level ◽  
Differential Outcomes ◽  
Race Ethnicity

Purpose Telegenetics has become the predominant mode of cancer genetic counseling during the COVID-19 pandemic. We sought to identify potential patient-level contraindicators for telegenetic genetic counseling. Methods We analyzed post-counseling (pre-result disclosure) follow-up data from a randomized noninferiority trial of a telephone genetic counseling versus usual care genetic counseling. Among 669 randomized participants, 600 completed pre-test counseling and 568 completed a 2-week follow-up assessment before receiving test results. In this analysis, we focused on genetic counseling outcomes (knowledge, decisional conflict, and distress). In multivariate models controlling for bivariate predictors of these outcomes, we tested our a priori hypotheses that pre-counseling numeracy, perceived stress, and race/ethnicity would moderate the outcomes of telephone genetic counseling versus usual care. Results Only numeracy significantly moderated associations between mode of genetic counseling and outcomes. Higher numeracy was associated with higher post-counseling knowledge following telephone genetic counseling ( p < 0.001), but not usual care ( p = 0.450). Higher numeracy was also associated with lower distress following telephone genetic counseling ( p = 0.009) but not usual care ( p = 0.16). Neither perceived stress nor race/ethnicity exhibited differential impacts on telephone genetic counseling versus usual care ( ps > 0.20). Conclusion Although high numeracy was associated with higher levels of knowledge following telegenetic counseling, we did not identify any clinically significant patient-level contraindicators for telegenetic counseling. These results lend further confidence to the broad use of telegenetics.

scholarly journals Follow-up effects of a tailored pre-counseling website with question prompt in breast cancer genetic counseling

2015 ◽  
Vol 98 (1) ◽  
pp. 69-76 ◽  
Author(s):  
Akke Albada ◽  
Sandra van Dulmen ◽  
Peter Spreeuwenberg ◽  
Margreet G.E.M. Ausems
Keyword(s):  
Breast Cancer ◽  
Genetic Counseling ◽  
Cancer Genetic Counseling ◽  
Cancer Genetic ◽  
Question Prompt

Novel intervention for decision support and distress in female cancer survivors considering fertility preservation.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 114-114
Author(s):  
Andrea Michele Bradford ◽  
Laura Covarrubias ◽  
Leslie R. Schover ◽  
Terri Lynn Woodard
Keyword(s):  
Decision Making ◽  
Decision Support ◽  
Cancer Survivors ◽  
Usual Care ◽  
Fertility Preservation ◽  
Psychological Assessment ◽  
Decisional Conflict ◽  
Decisional Conflict Scale ◽  
Conflict Scale

114 Background: Treatment-related infertility is a source of long-term psychological distress in cancer survivors, particularly among women. Decisions about fertility preservation (FP) are made under conditions of high stress and time pressure, which may contribute to the relatively low uptake of FP among women with cancer. Little is known about the effect of interventions to support the decision-making process and reduce fertility-related distress in cancer survivors considering FP. We describe the design and preliminary data from a randomized trial to determine whether incorporating psychological assessment and intervention into the standard FP consultation enhances satisfaction with decision-making and psychosocial outcomes. Methods: We developed a brief intervention for women referred to our institution’s oncofertility service for consideration of FP. The intervention focuses on values clarification for decision support, identification of unmet psychosocial needs, and mindfulness and acceptance-based skills. Participants were randomized to usual care (consultation with a reproductive endocrinologist and nurse) or the intervention (usual care plus a 1-hour visit with a psychologist and two follow-up calls). Outcomes included feasibility measures and measures of decisional conflict (Decisional Conflict Scale) and satisfaction with the FP program (Client Satisfaction Questionnaire-8). Results: All 14 participants randomized to date have completed baseline and 1-month assessments. The mean age was 32 (SD = 7.5, range 20-44), and the majority were nulliparous (n = 9, 64%). All 7 intervention participants completed at least 1 follow-up call, and 5 (71%) completed both follow-up calls. Across all participants, Decisional Conflict Scale scores decreased from baseline (M = 24.8, SD = 17.2) to 1 month (M = 22.2, SD = 16.3). Overall satisfaction with the program at 1 month was high (M = 29 out of a possible 32). Conclusions: Incorporating a psychological assessment and intervention into a standard FP consultation appears feasible and may improve levels of decisional conflict over time. Women appeared to find the intervention helpful when contemplating FP.

scholarly journals Decision aid on disclosure of mental health status to an employer: feasibility and outcomes of a randomised controlled trial

2013 ◽  
Vol 203 (5) ◽  
pp. 350-357 ◽  
Author(s):  
Claire Henderson ◽  
Elaine Brohan ◽  
Sarah Clement ◽  
Paul Williams ◽  
Francesca Lassman ◽  
...  
Keyword(s):  
Mental Health ◽  
Randomised Controlled Trial ◽  
Usual Care ◽  
Decision Aid ◽  
Controlled Trial ◽  
Intervention Group ◽  
Decisional Conflict ◽  
Full Time ◽  
Randomised Controlled

BackgroundMany mental health service users delay or avoid disclosing their condition to employers because of experience, or anticipation, of discrimination. However, non-disclosure precludes the ability to request ‘reasonable adjustments’. There have been no intervention studies to support decisionmaking about disclosure to an employer.AimsTo determine whether the decision aid has an effect that is sustained beyond its immediate impact; to determine whether a large-scale trial is feasible; and to optimise the designs of a larger trial and of the decision aid.MethodIn this exploratory randomised controlled trial (RCT) in London, participants were randomly assigned to use of a decision aid plus usual care or usual care alone. Follow-up was at 3 months. Primary outcomes were: (a) stage of decision-making; (b) decisional conflict; and (c) employment-related outcomes (trial registration number: NCT01379014).ResultsWe recruited 80 participants and interventions were completed for 36 out of 40 in the intervention group; in total 71 participants were followed up. Intention-to-treat analysis showed that reduction in decisional conflict was significantly greater in the intervention group than among controls (mean improvement −22.7 (s.d. = 15.2) v. −11.2 (s.d. = 18.1), P = 0.005). More of the intervention group than controls were in full-time employment at follow-up (P = 0.03).ConclusionsThe observed reduction in decisional conflict regarding disclosure has a number of potential benefits which next need to be tested in a definitive trial.

The impact of converting to telehealth for cancer genetic counseling and testing during the COVID-19 pandemic.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13612-e13612
Author(s):  
Katherine Crawford ◽  
Ekaterina Koelliker ◽  
Ellie Proussaloglou ◽  
Jessica Laprise ◽  
Jennifer Scalia Wilbur ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Saliva Sample ◽  
Cancer Genetic Counseling ◽  
Testing Time ◽  
Cancer Genetic ◽  
Blood Draw ◽  
Significant Difference ◽  
The Impact

e13612 Background: The COVID-19 outbreak in March 2020 resulted in the shift to telemedicine for many specialties including cancer genetic counseling (GC). We sought to understand the impact that converting GC services to telehealth (TH) would have on patient acceptance of recommended genetic testing, time to completion of testing, and time to follow-up GC consultation. Methods: Data analyzing GC in-patient vs. TH consultations were collected using both electronic medical record as well as a laboratory’s testing portal. Statistical analysis was performed using R statistical software. The rates of patient agreement to genetic testing and sample success, along with the time to report availability and to GC follow-up visit was compared between traditional in-person visits and TH visits during the COVID-19 pandemic. In-person visits from March -July 2019 were compared with date matched visits from March -July 2020, when all visits had been converted to TH. Patients who received an in-person consultation received a blood draw on the day of their appointment while TH patients were asked to mail a saliva sample back to the testing laboratory. Results: An analysis of a case-matched cohort between 2019 in-person new visits (n = 30) and 2020 TH new visits (n = 48) was performed. There was not a significant difference in rate of consent to suggested testing between in-person (93.3%) and TH (91.2%) (p = 0.29), though a few TH patients who consented failed to submit a sample (% tested = 93.3% vs. 85.4%, p = 0.01). TH patients had a longer time between their initial consult and when the test report was generated with average turn-around time increasing from 14.33 to 33.82 days (p < 0.1). There was no increase in time from initial consultation to follow up GC appointments (70.46 vs. 75.96 days, p = 0.74) for TH and in-person, respectively. Conclusions: Our data shows that during COVID-19, TH allowed patients to access GC with no significant differences in the length of time between initial consultation and follow up appointments. The type of GC received did not greatly influence a patient’s willingness to consent to testing, despite challenges related to the COVID-19 pandemic, indicating that TH services may be an acceptable substitute. However, TH services are not without their limitations as time between the initial appointment and receipt of test results was significantly longer and sample failure rates were higher. We postulate that the delay was due to the time it took to ship the saliva kit, have the patient collect the sample at home, and return the specimen back to the lab rather than the immediate blood draw that occurs during the in-person visit. The higher sample failure rate seen in TH is likely due to the differences between blood and saliva collections. Additional research is needed to fully understand the outcomes observed in this study in order to assist in developing the most effective strategies for cancer genetic TH services.

scholarly journals B-Sure: a randomized pilot trial of an interactive web-based decision support aid versus usual care in average-risk breast cancer patients considering contralateral prophylactic mastectomy

2019 ◽  
Vol 10 (2) ◽  
pp. 355-363 ◽  
Author(s):  
Sharon L Manne ◽  
Barbara L Smith ◽  
Sara Frederick ◽  
Anna Mitarotondo ◽  
Deborah A Kashy ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Support ◽  
Usual Care ◽  
Cancer Patients ◽  
Prophylactic Mastectomy ◽  
Contralateral Prophylactic Mastectomy ◽  
Decisional Conflict ◽  
Average Risk ◽  
Breast Cancer Patients

Abstract The use of contralateral prophylactic mastectomy (CPM) is increasing among breast cancer patients who are at average or “sporadic” risk for contralateral breast cancer. Because CPM provides no survival benefit for these patients, it is not medically recommended for them. Decision support aids may facilitate more informed, higher quality CPM decision. The purpose of this study was to evaluate the feasibility and acceptability of B-Sure, an online decision support aid to facilitate informed decisions regarding CPM, and to compare the impact of B-Sure in increasing CPM knowledge, reducing decisional conflict, and increasing preparedness to make the CPM decision among breast cancer patients at sporadic risk who are considering CPM. Ninety-three patients with unilateral, nonhereditary breast cancer considering CPM completed a baseline survey, were randomized to receive B-Sure or Usual care, and completed a 4-week follow-up survey assessing decisional conflict, preparedness to make the CPM decision, and CPM knowledge as well as self-efficacy, perceived risk, worry, CPM motivations, and the surgical decision. Study participation was high. B-Sure was viewed by almost 80% of the participants and was evaluated positively. At follow-up, patients assigned to B-Sure reported significantly higher clarity regarding the personal values relevant to the CPM decision and higher knowledge about CPM. B-Sure had smaller effects on other aspects of decisional conflict. B-Sure improved CPM knowledge and reduced decisional conflict. Patients considering CPM may benefit from an online decision support aid, but may be sensitive to approaches that they perceive as biased against CPM.

Abstract P191: Telephone-based Mindfulness Training In Diverse Prehypertensive Women: Results Of A Pilot Randomized Controlled Trial

Circulation ◽  
2021 ◽  
Vol 143 (Suppl_1) ◽  
Author(s):  
Jolaade Kalinowski ◽  
Sheila F Castaneda ◽  
Matthew A Allison ◽  
Zoe T Duberstein ◽  
Kiranjot Kaur ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Usual Care ◽  
Perceived Stress ◽  
Controlled Trial ◽  
Random Effect ◽  
Median Number ◽  
Mindfulness Training ◽  
Group Differences ◽  
Foreign Born

Introduction: Chronic stress is associated with incident hypertension and is a promising intervention target for lowering blood pressure (BP), particularly in women. Growing evidence suggests that mindfulness-based interventions can reduce BP and improve psychological outcomes but the in-person format of traditional programs limits access. The goal of this study was to evaluate the feasibility, acceptability and effects of telephone-delivered mindfulness-based cognitive therapy (MBCT-T) in women with prehypertension. Methods: We conducted a pilot RCT in which 37 women meeting JNC 7 criteria for prehypertension (SBP 120-139 mmHg or DBP 80-89 mmHg) and not taking antihypertensive medication were recruited from outpatient clinics or via the EHR. Eligible participants were randomized to usual care or MBCT-T, which involved 8 weekly 1-hour phone sessions delivered to small groups by a trained instructor. Outcomes included feasibility (session completion), acceptability (Client Satisfaction Questionnaire [CSQ]), SBP (mean of 3 clinic BP measurements), perceived stress (PSS-10) and depressive symptoms (PHQ-8). Linear mixed models with a random effect of intervention cohort were performed to compare 3-month changes in outcomes between study arms, adjusting for age and ethnicity. Results: The mean age was 50.7±17.7, 68% of participants were racial/ethnic minorities, and baseline SBP/DBP was 127.8±6.2/77.5±7.2 mmHg. There were no significant differences between study arms in demographics or baseline characteristics. The median number of sessions completed was 6 of 8. Fewer sessions were completed by employed vs. unemployed women (4.5 vs. 7.8, t=3.55, p=.003) and by foreign-born vs. U.S.-born women (2.8 vs. 5.9, t=1.87, p=.08). Overall 3-month retention was 89% but follow-up BP was missing in ~50% of participants due to COVID-19 research restrictions. Three-quarters of MBCT-T participants reported high satisfaction with the intervention (CSQ24). In the subgroup with complete follow-up data, SBP declined in both study arms but there was no significant between-group difference (p=0.51). Conversely, greater reductions in perceived stress and depressive symptoms were observed in the MBCT-T arm vs. usual care (between-group differences of 3.63 [PSS-10; p=.163] and 2.90 [PHQ-8; p=.008]). In per-protocol analyses limited to MBCT-T participants who completed ≥4 sessions, effects were larger for perceived stress and similar for depressive symptoms (between-group differences of 6.17 [PSS-10; p=.012] and 2.77 [PHQ-8; p=.025]). Conclusions: Results support the feasibility and acceptability of telephone-based mindfulness training in diverse women with prehypertension. Promising findings for stress and depressive symptoms suggest further studies are warranted. Strategies to address barriers to participation, particularly among working women and minorities, are needed.

HF: Education, Phone Follow-Up Top Usual Care

2010 ◽  
Vol 40 (19) ◽  
pp. 29
Author(s):  
DOUG BRUNK
Keyword(s):  
Usual Care

Rationale, design, and challenges with implementing a clinical intervention to teach appropriate gestational weight gain (TAGG): Protocol of a Randomized controlled trial (Preprint)

2019 ◽  
Author(s):  
Awathif Mackeen ◽  
Danielle Downs ◽  
Vonda Hetherington ◽  
Shawnee Lutcher ◽  
Jacob Mowery ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Weight Gain ◽  
Gestational Diabetes ◽  
Usual Care ◽  
Gestational Weight Gain ◽  
Perceived Stress ◽  
Controlled Trial ◽  
Household Food Security ◽  
Gestational Weight ◽  
Randomized Controlled

BACKGROUND Excessive gestational weight gain (GWG) has public health implications including preterm birth, preeclampsia, gestational diabetes, and cesarean delivery. In an effort to mitigate adverse consequences of excessive GWG, this study tests a health intervention that includes enhancements to improve knowledge and awareness of appropriate GWG, and patient-centered nutritional counseling to promote appropriate GWG. OBJECTIVE The primary objective of the study was to increase the proportion of women who are managing their GWG as recommended by the IOM.4,5 METHODS This randomized controlled trial was conducted at Geisinger in Pennsylvania where excessive GWG is common among women with pre-conception obesity. Eligible, consenting participants with pre-pregnancy body mass index >30.0 kg/m2 were randomized (1:1) to: 1) Usual Care: usual written educational materials and counseling by an obstetric care provider or 2) Enhanced Care: Usual Care plus a) a personalized letter from a physician detailing appropriate GWG, b) exposure to individualized GWG chart in the electronic health record via the patient portal, and c) a consult with a Registered Dietitian Nutritionist and follow-up via tele-health counseling (10-20 mins/1-2 weeks) for the duration of the pregnancy. RESULTS The primary outcome was the proportion of women that gain less than 20 pounds over the course of the pregnancy. Secondary outcomes include knowledge, expectations, and attitude about pregnancy weight gain; increased self-efficacy for ability to eat healthy and being physically active to manage weight; and eating behavior. Potential moderators that will be explored include sleep, perceived stress, perceived involvement in care, and household food security. Data collection has been completed as of November 2019. CONCLUSIONS As GWG care was initiated for mothers with pre-pregnancy BMI >30 kg/m2 within the first and second trimesters, the intervention may have the additional benefit of reducing other adverse pregnancy outcomes including the incidence of gestational diabetes due to healthier rates of GWG. In addition to assessing appropriate GWG, this project will assess eating habits, physical activity, GWG attitudes, sleep quality, and psychological measures, all of which are associated with GWG. Exploratory mediators including perceived stress and food insecurity will also be evaluated. CLINICALTRIAL ClinicalTrials.gov NCT02963428

scholarly journals P34 Characteristics, diagnosis and management of Cushing’s disease - A systematic review and meta-analysis

BJS Open ◽  
2021 ◽  
Vol 5 (Supplement_1) ◽  
Author(s):  
Chan Hee Koh ◽  
Danyal Z Khan ◽  
Ronneil Digpal ◽  
Hugo Layard Horsfall ◽  
Hani J Marcus ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Cushing’S Disease ◽  
Meta Analysis ◽  
A Priori ◽  
Pituitary Surgery ◽  
Serum Cortisol ◽  
Cushing's Disease ◽  
Diagnosis And Management ◽  
Over Time

Abstract Introduction The clinical practice and research in the diagnosis and management of Cushing’s disease remains heterogeneous and challenging to this day. We sought to establish the characteristics of Cushing’s disease, and the trends in diagnosis, management and reporting in this field. Methods Searches of PubMed and Embase were conducted. Study protocol was registered a-priori. Random-effects analyses were conducted to establish numerical estimates. Results Our screening returned 159 papers. The average age of adult patients with Cushing’s disease was 39.3, and 13.6 for children. The male:female ratio was 1:3. 8% of patients had undergone previous transsphenoidal resection. The ratio of macroadenomas: microadenomas:imaging-undetectable adenomas was 18:53:29. The most commonly reported preoperative biochemical investigations were serum cortisol (average 26.4µg/dL) and ACTH (77.5pg/dL). Postoperative cortisol was most frequently used to define remission (74.8%), most commonly with threshold of 5µg/dL (44.8%). Average remission rates were 77.8% with recurrence rate of 13.9%. Median follow-up was 38 months. Majority of papers reported age (81.9%) and sex (79.4%). Only 56.6% reported whether their patients had previous pituitary surgery. 45.3% reported whether their adenomas were macroadenoma, microadenoma or undetectable. Only 24.1% reported preoperative cortisol, and this did not improve over time. 60.4% reported numerical thresholds for cortisol in defining remission, and this improved significantly over time (p = 0.004). Visual inspection of bubbleplots showed increasing preference for threshold of 5µg/dL. 70.4% reported the length of follow up. Conclusion We quantified the characteristics of Cushing’s disease, and analysed the trends in investigation and reporting. This review may help to inform future efforts in forming guidelines for research and clinical practice.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

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