Pub Date : 2024-02-23DOI: 10.1016/j.pecinn.2024.100269
Kristine Elberg Dengsø , Anne Berg , Carsten Palnæs Hansen , Stefan K. Burgdorf , Paul S. Krohn , Martin Sillesen , Nina Spiegelhauer , Mette Tholstrup Bach , Marianne Melton , Betina Nielsen , Bo Marcel Christensen , Jeanette Finderup , Jens Hillingsø
Objective
To develop a patient decision aid facilitating shared decision making for patients with potential pancreatic cancer deciding about no treatment, surgical or medical treatment.
Methods
Based on a user-centred design by Wittemann et al., we developed a shared decision making intervention in three phases: 1) Understanding decision needs 2) Development of a patient decision aid (PtDA) based on a generic template 3) Assessment of the intervention from interviews with patients (n = 11), relatives (n = 11), nurses (n = 4) and surgeons (n = 2) analysed with thematic analysis, and measuring patients' perceptions of choice of options with the Decisional Conflict Scale.
Results
Results showed varying experiences with the use of the PtDA, with surgeons not finding PtDA useful as it was impractical and constraining with patients' conversations. There was no difference in patients' perceptions in choosing options for those being presented vs those patients not being presented for the PtDA.
Conclusion
The format and structure of the PtDA was not feasible for the surgeons as fundamental users in the present clinic.
Innovation
This study highlights the urgent need to consider clinical context before introducing a predefined tool and shows the importance of a multistakeholder approach. Research should focus on finding means to successful implement shared decision making.
{"title":"Have a vital end-user been overlooked? Developing a shared decision intervention for patients with potential pancreatic cancer regarding the choice of surgery","authors":"Kristine Elberg Dengsø , Anne Berg , Carsten Palnæs Hansen , Stefan K. Burgdorf , Paul S. Krohn , Martin Sillesen , Nina Spiegelhauer , Mette Tholstrup Bach , Marianne Melton , Betina Nielsen , Bo Marcel Christensen , Jeanette Finderup , Jens Hillingsø","doi":"10.1016/j.pecinn.2024.100269","DOIUrl":"https://doi.org/10.1016/j.pecinn.2024.100269","url":null,"abstract":"<div><h3>Objective</h3><p>To develop a patient decision aid facilitating shared decision making for patients with potential pancreatic cancer deciding about no treatment, surgical or medical treatment.</p></div><div><h3>Methods</h3><p>Based on a user-centred design by Wittemann et al., we developed a shared decision making intervention in three phases: 1) Understanding decision needs 2) Development of a patient decision aid (PtDA) based on a generic template 3) Assessment of the intervention from interviews with patients (<em>n</em> = 11), relatives (n = 11), nurses (<em>n</em> = 4) and surgeons (<em>n</em> = 2) analysed with thematic analysis, and measuring patients' perceptions of choice of options with the Decisional Conflict Scale.</p></div><div><h3>Results</h3><p>Results showed varying experiences with the use of the PtDA, with surgeons not finding PtDA useful as it was impractical and constraining with patients' conversations. There was no difference in patients' perceptions in choosing options for those being presented vs those patients not being presented for the PtDA.</p></div><div><h3>Conclusion</h3><p>The format and structure of the PtDA was not feasible for the surgeons as fundamental users in the present clinic.</p></div><div><h3>Innovation</h3><p>This study highlights the urgent need to consider clinical context before introducing a predefined tool and shows the importance of a multistakeholder approach. Research should focus on finding means to successful implement shared decision making.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100269"},"PeriodicalIF":0.0,"publicationDate":"2024-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000177/pdfft?md5=fa6299a01b11d90e8e7ce0c646db8394&pid=1-s2.0-S2772628224000177-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139985152","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-21DOI: 10.1016/j.pecinn.2024.100266
Shelley E. Varner-Perez , Shelley M. Hoffman , Kimberly Coleman-Phox , Sruthi Bhamidipalli , Patrick O. Monahan , Miriam Kuppermann , Brownsyne Tucker Edmonds
Objective
To pilot test and assess the feasibility and acceptability of chaplain-led decision coaching alongside the GOALS (Getting Optimal Alignment around Life Support) decision support tool to enhance decision-making in threatened periviable delivery.
Methods
Pregnant people admitted for threatened periviable delivery and their ‘important other’ (IO) were enrolled. Decisional conflict, acceptability, and knowledge were measured before and after the intervention. Chaplains journaled their impressions of training and coaching encounters. Descriptive analysis and conventional content analysis were completed.
Results
Eight pregnant people and two IOs participated. Decisional conflict decreased by a mean of 6.7 (SD = 9.4) and knowledge increased by a mean of 1.4 (SD = 1.8). All rated their experience as “good” or “excellent,” and the amount of information was “just right.” Participants found it “helpful to have someone to talk to” and noted chaplains helped them reach a decision. Chaplains found the intervention a valuable use of their time and skillset.
Conclusion
This is the first small-scale pilot study to utilize chaplains as decision coaches. Our results suggest that chaplain coaching with a decision support tool is feasible and well-accepted by parents and chaplains.
Innovations
Our findings recognize chaplains as an underutilized, yet practical resource in value-laden clinical decision-making.
{"title":"Feasibility and acceptability of chaplain decision coaching on Periviable resuscitation decision quality: A pilot study","authors":"Shelley E. Varner-Perez , Shelley M. Hoffman , Kimberly Coleman-Phox , Sruthi Bhamidipalli , Patrick O. Monahan , Miriam Kuppermann , Brownsyne Tucker Edmonds","doi":"10.1016/j.pecinn.2024.100266","DOIUrl":"https://doi.org/10.1016/j.pecinn.2024.100266","url":null,"abstract":"<div><h3>Objective</h3><p>To pilot test and assess the feasibility and acceptability of chaplain-led decision coaching alongside the GOALS (Getting Optimal Alignment around Life Support) decision support tool to enhance decision-making in threatened periviable delivery.</p></div><div><h3>Methods</h3><p>Pregnant people admitted for threatened periviable delivery and their ‘important other’ (IO) were enrolled. Decisional conflict, acceptability, and knowledge were measured before and after the intervention. Chaplains journaled their impressions of training and coaching encounters. Descriptive analysis and conventional content analysis were completed.</p></div><div><h3>Results</h3><p>Eight pregnant people and two IOs participated. Decisional conflict decreased by a mean of 6.7 (SD = 9.4) and knowledge increased by a mean of 1.4 (SD = 1.8). All rated their experience as “good” or “excellent,” and the amount of information was “just right.” Participants found it “helpful to have someone to talk to” and noted chaplains helped them reach a decision. Chaplains found the intervention a valuable use of their time and skillset.</p></div><div><h3>Conclusion</h3><p>This is the first small-scale pilot study to utilize chaplains as decision coaches. Our results suggest that chaplain coaching with a decision support tool is feasible and well-accepted by parents and chaplains.</p></div><div><h3>Innovations</h3><p>Our findings recognize chaplains as an underutilized, yet practical resource in value-laden clinical decision-making.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100266"},"PeriodicalIF":0.0,"publicationDate":"2024-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000141/pdfft?md5=e39b03d3b91f6e8deb28dc0552d51cb1&pid=1-s2.0-S2772628224000141-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139986956","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-18DOI: 10.1016/j.pecinn.2024.100268
Jeske M. bij de Weg , Marjon A. de Boer , Cynthia Meijer , Noëlle Lugtenburg , Marijke Melles , Johanna I.P. de Vries , Christianne J.M. de Groot
Objective
To assess the added value of a novel, mobile educative application to standard counselling on aspirin adherence during pregnancy versus standard counselling alone.
Methods
Participants were randomly assigned for additional use of a mobile educative application or standard counselling alone. Main outcome measures were adherence to aspirin measured by two validated questionnaires: Simplified Medication Adherence Questionnaire (SMAQ), Believes and Behaviour Questionnaire (BBQ), and patients reported tablet intake >90%.
Results
A total of 174 women with an indication for aspirin during pregnancy were included. The questionnaires were filled in by 126 out of the 174 participants (72.4%). Similar results were found in the app group and the standard counselling groups for both validated questionnaires. Tablet intake >90% was seen in 88.7% and 87.5% (p = 0.834) of the app group and standard counselling group respectively. Subgroup analyses demonstrated a negative effect of BMI and a positive effect of educational level on adherence.
Conclusions
Our study revealed no added effect of a novel, mobile educative application to standard counselling on aspirin adherence during pregnancy. Tablet intake was equally high in both groups probably explained by our high educated population.
Innovation
Future studies should focus on tailored counselling on medication to pregnant women's needs including medication reminders, addressing concerns, adequate health literacy and side effects, offering rewards to further stimulate aspirin adherence in pregnancy with optimal outcome for mother and their neonate.
{"title":"The value of a mobile educative Application additional to Standard counselling on aspirin Adherence in Pregnancy: the ASAP study, a randomised controlled trial","authors":"Jeske M. bij de Weg , Marjon A. de Boer , Cynthia Meijer , Noëlle Lugtenburg , Marijke Melles , Johanna I.P. de Vries , Christianne J.M. de Groot","doi":"10.1016/j.pecinn.2024.100268","DOIUrl":"10.1016/j.pecinn.2024.100268","url":null,"abstract":"<div><h3>Objective</h3><p>To assess the added value of a novel, mobile educative application to standard counselling on aspirin adherence during pregnancy versus standard counselling alone.</p></div><div><h3>Methods</h3><p>Participants were randomly assigned for additional use of a mobile educative application or standard counselling alone. Main outcome measures were adherence to aspirin measured by two validated questionnaires: Simplified Medication Adherence Questionnaire (SMAQ), Believes and Behaviour Questionnaire (BBQ), and patients reported tablet intake >90%.</p></div><div><h3>Results</h3><p>A total of 174 women with an indication for aspirin during pregnancy were included. The questionnaires were filled in by 126 out of the 174 participants (72.4%). Similar results were found in the app group and the standard counselling groups for both validated questionnaires. Tablet intake >90% was seen in 88.7% and 87.5% (<em>p</em> = 0.834) of the app group and standard counselling group respectively. Subgroup analyses demonstrated a negative effect of BMI and a positive effect of educational level on adherence.</p></div><div><h3>Conclusions</h3><p>Our study revealed no added effect of a novel, mobile educative application to standard counselling on aspirin adherence during pregnancy. Tablet intake was equally high in both groups probably explained by our high educated population.</p></div><div><h3>Innovation</h3><p>Future studies should focus on tailored counselling on medication to pregnant women's needs including medication reminders, addressing concerns, adequate health literacy and side effects, offering rewards to further stimulate aspirin adherence in pregnancy with optimal outcome for mother and their neonate.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100268"},"PeriodicalIF":0.0,"publicationDate":"2024-02-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000165/pdfft?md5=cd652bca4506975954b7fe0e2ae624c4&pid=1-s2.0-S2772628224000165-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139966725","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-16DOI: 10.1016/j.pecinn.2024.100267
Liana Eskola , Ethan Silverman , Sarah Rogers , Amy Zelenski
Objective
Palliative care communication skills help tailor care to patients' goals. With a palliative care physician shortage, non-physicians must gain these serious illness communication skills. Historically, trainings have targeted physician-only groups; our goal was to train interprofessional teams.
Methods
Workshops were conducted to teach palliative care communication skills and interprofessional communication. Participants completed surveys which included questions from the Interpersonal Reactivity Index, the Ekman Faces tool, the Consultation and Relational Empathy measure, open-ended questions about empathy, and measures of effective interprofessional practice.
Results
Participants felt the workshop improved their ability to listen (p < 0.001), understand patients' concerns (p < 0.001), and show compassion (p = 0.008). It increased the perceived value of peer observation (p < 0.001) and ability to reflect (p = 0.02) during complex conversations. Different types of professionals adopted different communication goals, though all affirmed the importance of active listening. Participants felt they improved their ability to work within an interprofessional team.
Conclusions
The course effectively trained 71 clinicians, the majority non-physicians, in serious illness communication and interprofessional team communication skills, and could be reproduced in similar settings.
Innovation
We adapted an approach common to physician-only trainings to diverse interprofessional groups, added a team-based component using Applied Improvisation, and demonstrated its effectiveness.
{"title":"Right-sizing interprofessional team training for serious-illness communication: A strength-based approach","authors":"Liana Eskola , Ethan Silverman , Sarah Rogers , Amy Zelenski","doi":"10.1016/j.pecinn.2024.100267","DOIUrl":"https://doi.org/10.1016/j.pecinn.2024.100267","url":null,"abstract":"<div><h3>Objective</h3><p>Palliative care communication skills help tailor care to patients' goals. With a palliative care physician shortage, non-physicians must gain these serious illness communication skills. Historically, trainings have targeted physician-only groups; our goal was to train interprofessional teams.</p></div><div><h3>Methods</h3><p>Workshops were conducted to teach palliative care communication skills and interprofessional communication. Participants completed surveys which included questions from the Interpersonal Reactivity Index, the Ekman Faces tool, the Consultation and Relational Empathy measure, open-ended questions about empathy, and measures of effective interprofessional practice.</p></div><div><h3>Results</h3><p>Participants felt the workshop improved their ability to listen (<em>p</em> < 0.001), understand patients' concerns (p < 0.001), and show compassion (<em>p</em> = 0.008). It increased the perceived value of peer observation (p < 0.001) and ability to reflect (<em>p</em> = 0.02) during complex conversations. Different types of professionals adopted different communication goals, though all affirmed the importance of active listening. Participants felt they improved their ability to work within an interprofessional team.</p></div><div><h3>Conclusions</h3><p>The course effectively trained 71 clinicians, the majority non-physicians, in serious illness communication and interprofessional team communication skills, and could be reproduced in similar settings.</p></div><div><h3>Innovation</h3><p>We adapted an approach common to physician-only trainings to diverse interprofessional groups, added a team-based component using Applied Improvisation, and demonstrated its effectiveness.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100267"},"PeriodicalIF":0.0,"publicationDate":"2024-02-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000153/pdfft?md5=68874b39eba0605bd5e497f9586bd7ef&pid=1-s2.0-S2772628224000153-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914902","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-13DOI: 10.1016/j.pecinn.2024.100265
Kelly W. Harris , Kelsey Schweiberger , Ann Kavanaugh-McHugh , Robert M. Arnold , Jessica Merlin , Judy C. Chang , Nadine A. Kasparian
Objective
Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations to identify the topics of uncertainty discussed.
Methods
In this observational, qualitative study, initial fetal cardiology consultations were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively and deductively developed and applied. This content analysis focused on uncertainty-related codes and associated themes.
Results
During 19 consultations including five clinicians, 13 different cardiac diagnoses were discussed (seven with high mortality risk). Median consultation length was 37 min (IQR: 26–51), with only 11% of words spoken by families. On average, 51% of total words spoken focused on uncertainty in relation to cardiac diagnosis, etiology, comorbidities, prognosis, childbirth, therapeutics, and logistics. Family-initiated discussion on uncertainty largely focused on childbirth and pregnancy and postpartum logistics.
Conclusions
Half of dialogue within initial fetal cardiology encounters discussed uncertainty surrounding prenatally diagnosed cCHD. Parent and clinician perspectives should be gathered on the essential content and optimal delivery of uncertainty-related topics.
Innovation
This study is conceptually and methodologically innovative as one of the first to examine audio-recorded dialogue between fetal cardiology clinicians and families.
{"title":"An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease","authors":"Kelly W. Harris , Kelsey Schweiberger , Ann Kavanaugh-McHugh , Robert M. Arnold , Jessica Merlin , Judy C. Chang , Nadine A. Kasparian","doi":"10.1016/j.pecinn.2024.100265","DOIUrl":"https://doi.org/10.1016/j.pecinn.2024.100265","url":null,"abstract":"<div><h3>Objective</h3><p>Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations to identify the topics of uncertainty discussed.</p></div><div><h3>Methods</h3><p>In this observational, qualitative study, initial fetal cardiology consultations were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively and deductively developed and applied. This content analysis focused on uncertainty-related codes and associated themes.</p></div><div><h3>Results</h3><p>During 19 consultations including five clinicians, 13 different cardiac diagnoses were discussed (seven with high mortality risk). Median consultation length was 37 min (IQR: 26–51), with only 11% of words spoken by families. On average, 51% of total words spoken focused on uncertainty in relation to cardiac diagnosis, etiology, comorbidities, prognosis, childbirth, therapeutics, and logistics. Family-initiated discussion on uncertainty largely focused on childbirth and pregnancy and postpartum logistics.</p></div><div><h3>Conclusions</h3><p>Half of dialogue within initial fetal cardiology encounters discussed uncertainty surrounding prenatally diagnosed cCHD. Parent and clinician perspectives should be gathered on the essential content and optimal delivery of uncertainty-related topics.</p></div><div><h3>Innovation</h3><p>This study is conceptually and methodologically innovative as one of the first to examine audio-recorded dialogue between fetal cardiology clinicians and families.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100265"},"PeriodicalIF":0.0,"publicationDate":"2024-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S277262822400013X/pdfft?md5=9543130febb134d77eaa99759016fd42&pid=1-s2.0-S277262822400013X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139749648","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-12DOI: 10.1016/j.pecinn.2024.100263
Ann-Margaret Dunn Navarra , Maurade Gormley , Eva Liang , Claire Loughran , Allison Vorderstrasse , David R. Garcia , Michael G. Rosenberg , Jason Fletcher , Lloyd A. Goldsamt
Objective
Describe the development and testing of a web-based platform for antiretroviral treatment (ART) adherence support among HIV+ adolescents and young adults (AYA) in a randomized controlled trial (RCT).
Methods
A seven-member multi-disciplinary team operationalized the flat, password protected, web-based platform. Manualized protocols guided the objectives and content for each of the eight web-based sessions. Team members evaluated usability and content validity. Client satisfaction and perceived ease of use was evaluated with the first ten HIV+ AYA participants.
Results
The web-based platform was developed, evaluated, refined, implemented and pilot tested between September 2020 to April 2022. Usability was rated as high; the evaluation of content validity showed an excellent fit between session content and objectives. HIV+ AYA participants (mean age = 24.2 years) were satisfied with the quality, type, and amount of support/education received, and found the platform easy to use, operate, and navigate. Average time spent per session was 6.5 min.
Conclusion
Findings support the usability, validity, acceptability, and feasibility of this web-based platform for ART adherence support among HIV+ AYA.
Innovation
Our research and findings are responsive to research gaps and the need for transparency in the methodological development and testing of web-based control arms for ART adherence support among HIV+ AYA.
{"title":"Developing and testing a web-based platform for antiretroviral therapy (ART) adherence support among adolescents and young adults (AYA) living with HIV","authors":"Ann-Margaret Dunn Navarra , Maurade Gormley , Eva Liang , Claire Loughran , Allison Vorderstrasse , David R. Garcia , Michael G. Rosenberg , Jason Fletcher , Lloyd A. Goldsamt","doi":"10.1016/j.pecinn.2024.100263","DOIUrl":"10.1016/j.pecinn.2024.100263","url":null,"abstract":"<div><h3>Objective</h3><p>Describe the development and testing of a web-based platform for antiretroviral treatment (ART) adherence support among HIV+ adolescents and young adults (AYA) in a randomized controlled trial (RCT).</p></div><div><h3>Methods</h3><p>A seven-member multi-disciplinary team operationalized the flat, password protected, web-based platform. Manualized protocols guided the objectives and content for each of the eight web-based sessions. Team members evaluated usability and content validity. Client satisfaction and perceived ease of use was evaluated with the first ten HIV+ AYA participants.</p></div><div><h3>Results</h3><p>The web-based platform was developed, evaluated, refined, implemented and pilot tested between September 2020 to April 2022. Usability was rated as high; the evaluation of content validity showed an excellent fit between session content and objectives. HIV+ AYA participants (mean age = 24.2 years) were satisfied with the quality, type, and amount of support/education received, and found the platform easy to use, operate, and navigate. Average time spent per session was 6.5 min.</p></div><div><h3>Conclusion</h3><p>Findings support the usability, validity, acceptability, and feasibility of this web-based platform for ART adherence support among HIV+ AYA.</p></div><div><h3>Innovation</h3><p>Our research and findings are responsive to research gaps and the need for transparency in the methodological development and testing of web-based control arms for ART adherence support among HIV+ AYA.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100263"},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000116/pdfft?md5=11f6660a38c7f5987ba1117d00951e8c&pid=1-s2.0-S2772628224000116-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139874246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-12DOI: 10.1016/j.pecinn.2024.100264
Eileen Ratzel , Ina Maria Pretzell , Thomas Kindler , Martin Weber , Christina Gerlach
Objective
Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers.
Methods
Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis.
Results
Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare.
Conclusion
To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone.
Innovation
The patient perspective improves the implementation of PROM under real-life clinical conditions.
{"title":"Patient Reported Outcome Measurement (PROM) under real-life conditions of non-curable cancer outpatients with the Integrated Palliative Outcome Scale (IPOS) and NCCN-Distress Thermometer – A mixed methods study","authors":"Eileen Ratzel , Ina Maria Pretzell , Thomas Kindler , Martin Weber , Christina Gerlach","doi":"10.1016/j.pecinn.2024.100264","DOIUrl":"https://doi.org/10.1016/j.pecinn.2024.100264","url":null,"abstract":"<div><h3>Objective</h3><p>Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers.</p></div><div><h3>Methods</h3><p>Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis.</p></div><div><h3>Results</h3><p>Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare.</p></div><div><h3>Conclusion</h3><p>To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone.</p></div><div><h3>Innovation</h3><p>The patient perspective improves the implementation of PROM under real-life clinical conditions.</p></div>","PeriodicalId":74407,"journal":{"name":"PEC innovation","volume":"4 ","pages":"Article 100264"},"PeriodicalIF":0.0,"publicationDate":"2024-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772628224000128/pdfft?md5=ab7a105febacc570bc2629f46b78bf6b&pid=1-s2.0-S2772628224000128-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139749649","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Phase one involved 33 participants to create response options for a computerized, self-administered NVS (C-NVS). Phase two was a randomized crossover trial to test the consistency of C-NVS and original, interviewer-administered NVS (I-NVS) scores in 89 participants.
Results
Linear mixed-effects regression model results showed a significant carryover effect (p < .001). Crossover trial data from time 1 showed that participants who initially received the C-NVS had significantly higher average scores (M = 5.7, SD = 0.6) than participants who received the I-NVS (M = 4.5, SD = 1.5; t(87) = 5.25, p < .001). Exploratory analysis results showed that when the washout period was longer than 33 days (75th percentile) the carryover effect was not statistically significant (p = .077).
Conclusion and innovation
Findings suggest learning can occur when health literacy screeners are administered more than once in less than a month's time and computerized, self-administered health literacy screeners may produce ceiling effects. A universal precautions approach to health literacy therefore remains germane.
Pub Date : 2024-02-02DOI: 10.1016/j.pecinn.2024.100260
Amy B. Zelenski , Karlie Haug , Kyle J. Bushaw , Anne Buffington , Taylor Bradley , Kristine L. Kwekkeboom , Lily Stalter , Bret M. Hanlon , Maureen J. Wakeen , Roy A. Jhagroo , Laura J. Maursetter , Sara K. Johnson , Toby C. Campbell , Margaret L. Schwarze
Objective
To describe the outcomes of training nephrology clinicians and clinical research participants, to use the Best Case/Worst Case Communication intervention, for discussions about dialysis initiation for patients with life-limiting illness, during a randomized clinical trial to ensure competency, fidelity to the intervention, and adherence to study protocols and the intervention throughout the trial.
Methods
We enrolled 68 nephrologists at ten study sites and randomized them to receive training or wait-list control. We collected copies of completed graphic aids (component of the intervention), used with study-enrolled patients, to measure fidelity and adherence.
Results
We trained 34 of 36 nephrologists to competence and 27 completed the entire program. We received 60 graphic aids for study-enrolled patients for a 73% return rate in the intervention arm. The intervention fidelity score for the graphic aid reflected completion of all elements throughout the study.
Conclusion
We successfully taught the Best Case/Worst Case Communication intervention to clinicians as research participants within a randomized clinical trial.
Innovation
Decisions about dialysis are an opportunity to discuss prognosis and uncertainty in relation to consideration of prolonged life supporting therapy. Our study reveals a strategy to evaluate adherence to a communication intervention in real time during a clinical study.
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Pub Date : 2024-02-02DOI: 10.1016/j.pecinn.2024.100261
Stephen R. Neely , Kaila Witkowski
Objective
This study examines the impact of misinformation belief on the willingness of American adults to receive ongoing COVID-19 vaccine boosters.
Methods
A representative survey of 600 adults in the state of Florida was fielded in August of 2023. For this study, responses were analyzed for the 443 previously vaccinated respondents in that sample using both descriptive and inferential statistical methods.
Results
Among previously vaccinated individuals, belief in misinformation remained relatively high. 49% of respondents believe that COVID-19 vaccines contain a live strain of the virus, and roughly 40% believe that vaccines can cause you to “get sick” with COVID-19. Belief in misinformation was associated with a statistically significant decrease in the likelihood of receiving ongoing vaccine boosters, ceteris paribus.
Conclusion
While confidence in public health guidelines is the most compelling determinant of vaccine acceptance, misinformation continues to undermine vaccination efforts. Addressing common myths about COVID-19 vaccines may help to improve booster shot acceptance among previously vaccinated Americans.
Innovation
Throughout the COVID-19 pandemic, health professionals and public health agencies have been forced to innovate in real-time, as digital platforms have fueled the spread of viral misinformation. This study aims to inform these efforts by exploring and deepening our understanding of the impact that belief in misinformation has on vaccination behaviors.
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