scholarly journals Preoperative Group Consultation Prior to Surgery for Colorectal Cancer—an Explorative Study of a New Patient Education Method

2021 ◽  
Author(s):  
Sofie Walming ◽  
Eva Angenete ◽  
David Bock ◽  
Mattias Block ◽  
Hanna de la Croix ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Patient Education ◽  
Response Rate ◽  
University Hospital ◽  
Sense Of Control ◽  
Structured Interviews ◽  
Group Setting ◽  
Disease Treatment ◽  
Explorative Study ◽  
Group Consultation

Abstract Patients with colorectal cancer may lack information about the disease and treatment. In 2017, a group consultation before start of surgery was introduced at a university hospital in western Sweden to inform about the disease, treatment, and ongoing scientific studies. The primary aim of this study was to explore the experience of the patients attending the group consultation. Based on semi-structured interviews with patients with colorectal cancer, a questionnaire was constructed and administered to patients, both those attending and those not attending the group consultation. In total, 124 patients were included and the response rate was 86%. A majority of patients attending the group consultation would recommend it to someone else with the same illness. Of the patients attending the group consultation, 81% (30/37) patients agreed, fully or partially, that attending the group consultation had increased their sense of control and 89% (33/37) that the information they received at the group consultation increased their feeling of participation in the treatment. Preoperative group consultation is a feasible modality for informing and discussing the upcoming treatment for colorectal cancer with the patients, and the patients who attended the group setting appreciated it. Attending the group consultation increased the patients’ feeling of active participation in their treatment and their sense of control, which could possibly both improve their experience of their illness and facilitate recovery. ClinicalTrials.gov identifier NCT03888313

scholarly journals Empowering patient education on self-care activity among patients with colorectal cancer – a research protocol for a randomised trial

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Leena Tuominen ◽  
Marita Ritmala-Castrén ◽  
Pia Nikander ◽  
Siru Mäkelä ◽  
Tero Vahlberg ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Patient Education ◽  
Randomised Trial ◽  
Self Care ◽  
Nursing Intervention ◽  
University Hospital ◽  
Eligibility Criteria ◽  
Link Type ◽  
Care Activity ◽  
Positive Effect

Abstract Background Chemotherapy-induced side effects may have a negative effect on nutrition intake, thus increasing the risk of malnutrition and consequently, other serious complications for patients with cancer. The prevalence of malnutrition is common among patients with colorectal cancer. Nurse-led empowering education may have a positive effect on self-care activity in this patient group. Therefore, our purpose is to develop an empowering educational nursing intervention and test its effect on self-care activation and knowledge level among patients with colorectal cancer during chemotherapy. Secondary outcomes are quality of life and risk of malnutrition. Methods An interdisciplinary expert group developed a face-to-face empowering educational intervention using teach-back method. A two-arm, single-centre, superiority trial with stratified randomisation (1:1) and pre-post measures will be used to assess the effect of the intervention compared to standard care. Patients (N = 40 + 40) will be recruited in one university hospital outpatient clinic in Finland. Eligibility criteria are adult patients diagnosed with colorectal cancer starting oral fluoropyrimidine or combination chemotherapy treatment. A registered nurse experienced in oncology will deliver the intervention 2 weeks after the first chemotherapy. Outcomes are measured before intervention (M0) and after a two-month follow-up period (M1). Discussion This study will assess whether nurse-led empowering education using teach-back method is effective on self-care activity among patients with colorectal cancer. If the intervention has a positive effect, it may be implemented into patient education in a corresponding context. Trial registration ClinicalTrials.gov: NCT04160650 Registered 12 November 2019 - retrospectively registered

Informed consent: Towards improved lay-friendliness of patient information sheets

2014 ◽  
Vol 10 (3) ◽  
pp. 201-211
Author(s):  
Morten Pilegaard ◽  
Hanne Berg Ravn
Keyword(s):  
Informed Consent ◽  
Information Structure ◽  
Language Use ◽  
Ethical Standards ◽  
Structured Interviews ◽  
Explorative Study ◽  
Microsoft Word ◽  
Text Production ◽  
Linguistic Intervention ◽  
Set Up

Regional research ethics committee (REC) members have voiced a need for the linguistic improvement of informed consent documents to ensure duly informed consent and to ease committee deliberation. We have little knowledge of what elements of language use hamper comprehension, or of the extent of medical researchers’ appreciation of this problem and their willingness to accept intervention. This qualitative, explorative study proposes an intervention design and tests its feasibility and acceptability. Semi-structured interviews with potential REC applicants informed a linguistic intervention benchmarked against existing guidelines, mandated locally and nationally, and then evaluated quantitatively in a semi-controlled set-up and qualitatively via questionnaires. Potential applicants professed the psychological acceptability of linguistic intervention. The intervention comprised a downloadable Microsoft Word template outlining information structure, a detailed guideline offering advice for each move and self-selected linguistic screening. It was used by 14 applicants and had a measurable effect on REC deliberation time and approval rates. The intervention instruments overall made it easier for applicants to produce informed consent documents meeting prescribed ethical standards concerning lay-friendliness. In conclusion, it was found that linguistic intervention is relevant, feasible and psychologically acceptable to REC applicants; it aids their text production process and seems to enhance the lay-friendliness of these texts.

scholarly journals AB1271 PATIENT EDUCATION IN PSORIATIC ARTHRITIS: A SERVICE EVALUATION AT ONE YEAR

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1926.2-1927
Author(s):  
K. Austin ◽  
R. Prasad
Keyword(s):  
Psoriatic Arthritis ◽  
Patient Education ◽  
Support Group ◽  
Inflammatory Arthritis ◽  
Disease Duration ◽  
World Health ◽  
Online Resources ◽  
Group Setting ◽  
Education Session ◽  
The World

Background:Recent studies have demonstrated an increasing burden of musculoskeletal (MSK) diseases worldwide.1The importance of patient education (PE) is often overlooked in the management of long term inflammatory conditions. The European League Against Rheumatism recommends that PE should be integral to standard of care in inflammatory arthritis.2PE increases patients’ knowledge, skills and confidence in managing their condition and improves patient activation (PA). Evidence shows that improved PA results in better outcomes and improved experiences of care. We previously reported on improved knowledge and confidence amongst a small patient group with psoriatic arthritis (PsA) who had attended a pilot education session.3This education session was delivered to a wider group of patients with PsA over a 12 month period; we report on the evaluation received from this service.Objectives:To provide a PE programme to a wider group of patients with PsA, using a multi-disciplinary team (MDT) approach and to evaluate whether this improved patients’ knowledge, skills and confidence in managing their PsA.Methods:Adult patients with PsA attending their rheumatology clinic appointments were invited to a 2.5 hour MDT education session which covered: 1) a general overview of PsA; 2) medications used in PsA; 3) the role of physiotherapy and occupational therapy; 4) flares and self- management. These were interactive sessions, held in a small group setting to allow for informal discussion and questions to the MDT. Written materials including several booklets and online resources were also provided. Patients evaluated their knowledge or understanding before and after each topic covered, on the same day, using an evaluation tool with1-10 Likert scale items. Changes in ratings were analysed using student’s t-tests. Patients were also asked: which aspects they found particularly helpful; if there was anything they would like to have added/ have more of in the session; whether they found the session helpful; whether they would recommend it to other patients; whether they would be interested in developing a PsA patient support group.Results:Four sessions were held over a 12 month period. A total of 32 patients attended; 10 males and 22 females, across a range of age categories. Disease duration varied from less than1 year to over 10 years. There were statistically significant improvements in all topics covered: mean improvement of 91% in how well informed patients felt about PsA overall (p<0.0001); mean improvement of 74% in confidence in accessing help from the MDT (p<0.0001); mean improvement of 122% in how well informed patients were about medications used in PsA (p<0.0001); mean improvement of 99% in patients’ confidence in self-managing a flare (p<0.0001). Aspects that patients found particularly helpful included “The whole session”, “Asking questions to all different professionals”, “Meeting other sufferers”, “Management of flares”, “Fatigue information” and “Online resources”. Overall, 97% of patients (31 out of 32) found the session helpful and would recommend it to others. Over 40% of patients expressed interest in developing a local PsA support group.Conclusion:Following a 2.5 hour education session, improved knowledge, skills and confidence in managing their PsA was reported by 97% of patients, including patients with disease duration of > 10 years. This supports our previous finding that an interactive, group PsA education programme is a feasible and important adjunct to patient care.References:[1]Sebbag E, Felten R, Sagez F, et al. The world-wide burden of musculoskeletal diseases: a systematic analysis of the World Health Organization Burden of Diseases Database. Annals of the Rheumatic Diseases 2019;78:844-848.[2]Zangi HA, Ndosi M, Adams J, et al. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis. 2015;74(6):954-62[3]Austin K, Jones N, Prasad R. Patient Education in psoriatic arthritis: addressing an unmet need. Ann Rheum Dis. 2019;78(suppl 2):A2134.Disclosure of Interests:Keziah Austin: None declared, Roopa Prasad Speakers bureau: Received speaker fees for Celgene, honorarium from Merck, advisory board fees from Bristol-Myers Squibb; all unrelated to the contents of this abstract.

scholarly journals Couples’ experiences with expanded carrier screening: evaluation of a university hospital screening offer

2021 ◽  
Author(s):  
Ivy van Dijke ◽  
Phillis Lakeman ◽  
Naoual Sabiri ◽  
Hanna Rusticus ◽  
Cecile P. E. Ottenheim ◽  
...  
Keyword(s):  
High Risk ◽  
Medical Center ◽  
Informed Choice ◽  
Carrier Screening ◽  
University Hospital ◽  
Structured Interviews ◽  
Expanded Carrier Screening ◽  
Post Test ◽  
Future Child ◽  
Clinically Significant

AbstractPreconception carrier screening offers couples the possibility to receive information about the risk of having a child with a recessive disorder. Since 2016, an expanded carrier screening (ECS) test for 50 severe autosomal recessive disorders has been available at Amsterdam Medical Center, a Dutch university hospital. This mixed-methods study evaluated the experiences of couples that participated in the carrier screening offer, including high-risk participants, as well as participants with a general population risk. All participants received genetic counselling, and pre- (n = 132) and post-test (n = 86) questionnaires and semi-structured interviews (n = 16) were administered. The most important reason to have ECS was to spare a future child a life with a severe disorder (47%). The majority of survey respondents made an informed decision (86%), as assessed by the Multidimensional Measure of Informed Choice. Among the 86 respondents, 27 individual carriers and no new carrier couples were identified. Turn-around time of the test results was considered too long and costs were perceived as too high. Overall, mean levels of anxiety were not clinically elevated. High-risk respondents (n = 89) and pregnant respondents (n = 13) experienced higher levels of anxiety before testing, which decreased after receiving the test result. Although not clinically significant, distress was on average higher for carriers compared to non-carriers (p < 0.0001). All respondents would opt for the test again, and 80.2% would recommend it to others. The results suggest that ECS should ideally be offered before pregnancy, to minimise anxiety. This study could inform current and future implementation initiatives of preconception ECS.

474 Multiple combinational strategies of immunotherapy for esophageal squamous cell carcinoma: one institutional experience in Taiwan since 2016

2020 ◽  
Vol 8 (Suppl 3) ◽  
pp. A505-A505
Author(s):  
Jo-Pai Chen ◽  
Wei-Chen Lu ◽  
Ruey-Long Hong
Keyword(s):  
Squamous Cell Carcinoma ◽  
Esophageal Squamous Cell Carcinoma ◽  
Cell Carcinoma ◽  
Squamous Cell ◽  
Clinical Benefit ◽  
Response Rate ◽  
University Hospital ◽  
List Type ◽  
Duration Of Response ◽  
Institutional Experience

BackgroundEsophageal squamous cell carcinoma is still a health burden in Taiwan. In R/M setting, the prognosis becomes worse. ESCC is still an immunogenic cancer. In randomized 2nd line ATTRACTION-3 study(nivolumab vs taxane after PF failure), median OS improved from 8.4 months in chemotherapy to 10.9 months in nivolumab(HR, 0.77; 95% CI, 0.62–0.96; p =0.019). The median duration of response was 3.9 months and 6.9 months. Nivolumab is a new 2nd line option for ESCC.MethodsFrom early 2016 to early 2020, 15 advanced ESCC patients had ever received immunotherapy-containing regimens in Yun-lin Branch of National Taiwan University Hospital and were analyzed.ResultsThe overall response to immunotherapy-containing regimens was 60%(9/15) and clinical benefit was 80%(12/15). 2nd line nivolumab was given in 3 cases; response rate was33% and clinical benefit was 67%. 2nd line afatinib combined with anti-PD1 was given in 9 case; response rate was 67% and clinical benefit was 78%. The response rate of 2nd line afatinib & pembrolizumab was 75%(3/4); however, Gr. III pneumonitis & Gr. II hepatitis were noted in the patient with progression. The response rate of 2nd line afatinib & nivolumab was 60%(3/5) and clinical benefit was 80%(4/5); skin rash and diarrhea were often found. 1st line afatinib combined with anti-PD1 was given in 3 patients; response rate was 67% and clinical benefit was 100%. The response rate of 1st line afatinib & nivolumab was 100%(2/2).ConclusionsEGFR TKIs have multiple immuno-modulatory effects and may increase immunotherapy benefits in ESCC. Anti-PD1 and anti-CTLA4, another possible rationale, could bring more benefits maybe in 1st line CheckMate649 study.AcknowledgementsNilTrial RegistrationN/AEthics ApprovalN/AConsentWritten informed consent was obtained from the patient for publication of this abstract and any accompanying images. A copy of the written consent is available for review by the Editor of this journal.ReferencesNil

scholarly journals Leadership assumptions on implementation of patient involvement methods

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kathrine Håland Jeppesen ◽  
Kirsten Frederiksen ◽  
Marianne Johansson Joergensen ◽  
Kirsten Beedholm
Keyword(s):  
Health Care ◽  
Organizational Learning ◽  
Health Care Professionals ◽  
Large Scale ◽  
Patient Involvement ◽  
Hospital Setting ◽  
Implementation Process ◽  
University Hospital ◽  
Structured Interviews ◽  
Implementation Processes

Abstract Background From 2014 to 17, a large-scale project, ‘The User-involving Hospital’, was implemented at a Danish university hospital. Research highlights leadership as crucial for the outcome of change processes in general and for implementation processes in particular. According to the theory on organizational learning by Agyris and Schön, successful change requires organizational learning. Argyris and Schön consider that the assumptions of involved participants play an important role in organizational learning and processes. The purpose was to explore leaders’ assumptions concerning implementation of patient involvement methods in a hospital setting. Methods Qualitative explorative interview study with the six top leaders in the implementation project. The semi-structured interviews were conducted and analyzed in accordance with Kvale and Brinkmanns’ seven stages of interview research. Result The main leadership assumptions on what is needed in the implementation process are in line with the perceived elements in organizational learning according to the theory of Argyris and Schön. Hence, they argued that implementation of patient involvement requires a culture change among health care professionals. Two aspects on how to obtain success in the implementation process were identified based on leadership assumptions: “The health care professionals’ roles in the implementation process” and “The leaders’ own roles in the implementation process”. Conclusion The top leaders considered implementation of patient involvement a change process that necessitates a change in culture with health care professionals as crucial actors. Furthermore, the top leaders considered themselves important facilitators of this implementation process.

Today in Light of Yesterday: An Exploration of Workers’ Childhood Memories in the Context of Child Protection Practice

2021 ◽  
Author(s):  
Sean A R St. Jean ◽  
Brian Rasmussen ◽  
Judy Gillespie ◽  
Daniel Salhani
Keyword(s):  
Child Protection ◽  
Research Question ◽  
Childhood Adversity ◽  
Well Being ◽  
Childhood Memories ◽  
Structured Interviews ◽  
Child Protection Workers ◽  
Professional Experiences ◽  
Explorative Study ◽  
Parents And Children

Abstract Child protection workers are routinely faced with emotionally intense work, both personally and vicariously through the traumatic narratives and experiences of parents and children. What remains largely unknown is how child protection workers’ own childhood memories might influence the manner in which they experience and are affected by those narratives. The aim of this explorative study was to use Interpretive Phenomenological Analysis as a research methodology to answer the research question, ‘In what ways do social workers experience, and make sense of, their own childhood memories in the context of their child protection practice?’ Semi-structured interviews were conducted with eight child protection workers, aiming to understand their personal and professional experiences with regard to this question. The study found a relationship between various forms of childhood adversity and the presence of negative present-day triggers when participants were faced with practice scenarios that bore similarity to those experiences. Implications with regard to child protection worker well-being, countertransference and risk decision-making are discussed.

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