Development, Feasibility, and Acceptability of the Electronic Patient Benefit Index for Psoriasis in Clinical Practice: Mixed Methods Study
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SUBMITTER: Otten M
PROVIDER: S-EPMC11344180 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundPatient-reported outcomes (PROs) can be defined as any report of a patient's health taken directly from the patient. Routine collection of PRO data has been shown to offer potential benefits to patient-doctor communication. Electronic forms of PRO measures (PROMs) could be more beneficial in comparison to traditional PROMs in obtaining PROs from patients. However, it is currently unclear whether the routine collection of electronic PRO data could result in better outcomes for patients undergoing laparoscopic cholecystectomy (LC).ObjectiveThis study aims to explore the perspectives of patients and surgeons on the use of electronic PROMs. Based on prior research, technical skill and experience level of the surgeon, long-term quality of life, patient involvement in decision-making, communication skills of the surgeon, cleanliness of the ward environment, and standards of nursing care are identified to be the most important factors for the patients.MethodsThis is a mixed methods prospective study that will collect both quantitative (survey) and qualitative (interview) data. The study has two components. The first involves the distribution of an electronic presurvey to patients who received elective LC within 48 hours of their surgery (n=80). This survey will explore the perspective of patients regarding the procedure, hospital experience, long-term outcomes, and the perceived value of using PROMs. These patients will then be followed up after 1 year and given another survey. The second component involves the distribution of the same survey and the completion of structured interviews with general surgeons (n=10). The survey will ascertain what PROs from the participants are most useful for the surgeons and the interviews will focus on how the surgeons view routine PRO collection. A convenience sampling approach will be used. Surveys will be distributed through Qualtrics and interviews will be completed on Microsoft Teams.ResultsData collection began on February 14, 2023. As of February 12, 2024, 71 of 80 recruited patients have been given the presurvey. The follow-up with the patients and the general surgeon components of the study have not begun. The expected completion date of this study is in April 2025.ConclusionsOverall, this study will investigate the potential of electronic PRO collection to offer value for patients and general surgeons. This approach will ensure that patient care is investigated in a multifaceted way, offering patient-centric guidance to surgeons in their approach to care.International registered report identifier (irrid)DERR1-10.2196/57344.
| S-EPMC11369529 | biostudies-literature
Project description:IntroductionThis cross-sectional survey was conducted with National Psoriasis Foundation (NPF) to capture treatment perspectives and expectations in patients with psoriasis (PsO) using Patient Needs Questionnaire (PNQ) of Patient Benefit Index (PBI).MethodsAdult participants with self-reported diagnosis of PsO responded to the PNQ portion of PBI by indicating how much they valued different treatment attributes. All the treatment goals were captured on a five-point Likert scale (0 = "Not important", 4 = "Very important"). Treatment goals were obtained for overall population and subgroups based on severity of disease Patient Global Assessment (PGA), age, gender, and Dermatology Life Quality Index (DLQI) total score. All data were expressed as mean and standard deviation [SD].ResultsA total of 1200 participants completed the survey (mean age 51.5 years). Top treatment goal in the overall population was "to have confidence in the therapy" (3.46 [1.01]). Unique to the higher severity subgroup (PGA ≥ 3), "to find a clear diagnosis and therapy" was a top five goal and "to get better skin quickly" was for those with lesser severity (PGA < 3). "To be free of itching" (3.36 [0.99]) was the unique goal in the < 40 age group whereas it was "to get better skin quickly" (3.27 [1.12]) in the ≥ 40 group. In women and men, "to be free of itching" (3.38 [1.13]) and "to get better skin quickly" (3.20 [1.09]) were top five goals, respectively. Patients with ≥ 10 DLQI scores expressed higher treatment goal "to regain control of the disease" (3.66 [0.67]) compared to those with ≤ 10 DLQI scores who expressed "to have confidence in the therapy" (3.40 [1.11]) as the topmost treatment goal.ConclusionOur results suggest that in patients with PsO, treatment preferences can vary with different characteristics such as age, severity, and gender as measured by using PNQ. Further exploration of this data will help inform treatment decisions and optimize patient outcomes.
| S-EPMC9122869 | biostudies-literature
Project description:Genomic Grade Index (GGI) is a 97-gene signature that improves histologic grade (HG) classification in invasive breast carcinoma. In this prospective study we sought to evaluate the feasibility of performing GGI in routine clinical practice and its impact on treatment recommendations. Patients with pT1pT2 or operable pT3, N0-3 invasive breast carcinoma were recruited from 8 centers in Belgium. Fresh surgical samples were sent at room temperature in the MapQuant Dx™ PathKit for centralized genomic analysis. Genomic profiles were determined using Affymetrix U133 Plus 2.0 and GGI calculated using the MapQuant Dx™ protocol, which defines tumors as low or high Genomic Grade (GG-1 and GG-3 respectively). 180 pts were recruited and 155 were eligible. The MapQuant test was performed in 142 cases and GGI was obtained in 78% of cases (n=111). Reasons for failures were 15 samples with <30% of invasive tumor cells (11%), 15 with insufficient RNA quality (10%), and 1 failed hybridization (<1%). For tumors with an available representative sample (≥ 30% inv. tumor cells) (n=127), the success rate was 87.5 %. GGI reclassified 69% of the 54 HG2 tumors as GG-1 (54%) or GG-3 (46%). Changes in treatment recommendations occurred mainly in the subset of HG2 tumors reclassified into GG-3, with increased use of chemotherapy in this subset. The use of GGI is feasible in routine clinical practice and impacts treatment decisions in early-stage breast cancer.
2013-06-03 | GSE43365 | GEO
Project description:BackgroundHealth services have advocated a stratified medicine approach in mental health, but little is known about whether service users would accept this approach.AimsTo explore service users' views of the acceptability of stratified medicine for treatment-resistant schizophrenia compared to the traditional "trial-and-error" approach.MethodsA mixed methods observational study that explored questionnaire responses on acceptability and whether these responses were affected by demographic or clinical variables. We also investigated whether treatment responsiveness or experience of invasive tests (brain scans and blood tests) affected participants' responses. Questionnaire generated qualitative data were analyzed thematically. Participants (N108) were aged 18-65, had a diagnosis of schizophrenia, and were adherent to antipsychotic medication.ResultsAcceptability of a stratified approach was high, even after participants had experienced invasive tests. Most rated it as safer (62% vs 43%; P < .01 [CI: -1.69 to 2.08]), less risky (77% vs 44%; P < .01 [CI: -1.75 to 1.10]), and less painful (90% vs 73%; P < 0.01 [CI: -0.84 to 0.5]) and this was not affected by treatment responsiveness or test experience. Although not statistically significant, treatment nonresponders were more willing to undergo invasive tests. Qualitatively, all participants raised concerns about the risks, discomfort, and potential side effects associated with the invasive tests.ConclusionsService users were positive about a stratified approach for choosing treatments but were wary of devolving clinical decisions to purely data-driven algorithms. These results reinforce the value of service user perspectives in the development and evaluation of novel treatment approaches.
| S-EPMC8650064 | biostudies-literature
Project description:BACKGROUND:Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP). METHOD:A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined. The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months. RESULTS:Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful. CONCLUSIONS:DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design. TRIAL REGISTRATION:The study was registered retrospectively on the 22nd of December 2017 at the German Clinical Trials Register ( DRKS00013627 ).
| S-EPMC5944046 | biostudies-literature
Project description:Genomic Grade Index (GGI) is a 97-gene signature that improves histologic grade (HG) classification in invasive breast carcinoma. In this prospective study we sought to evaluate the feasibility of performing GGI in routine clinical practice and its impact on treatment recommendations. Patients with pT1pT2 or operable pT3, N0-3 invasive breast carcinoma were recruited from 8 centers in Belgium. Fresh surgical samples were sent at room temperature in the MapQuant DxM-bM-^DM-" PathKit for centralized genomic analysis. Genomic profiles were determined using Affymetrix U133 Plus 2.0 and GGI calculated using the MapQuant DxM-bM-^DM-" protocol, which defines tumors as low or high Genomic Grade (GG-1 and GG-3 respectively). 180 pts were recruited and 155 were eligible. The MapQuant test was performed in 142 cases and GGI was obtained in 78% of cases (n=111). Reasons for failures were 15 samples with <30% of invasive tumor cells (11%), 15 with insufficient RNA quality (10%), and 1 failed hybridization (<1%). For tumors with an available representative sample (M-bM-^IM-% 30% inv. tumor cells) (n=127), the success rate was 87.5 %. GGI reclassified 69% of the 54 HG2 tumors as GG-1 (54%) or GG-3 (46%). Changes in treatment recommendations occurred mainly in the subset of HG2 tumors reclassified into GG-3, with increased use of chemotherapy in this subset. The use of GGI is feasible in routine clinical practice and impacts treatment decisions in early-stage breast cancer. Total RNA was extracted from fresh tumor tissues comprising M-bM-^IM-%30% invasive tumor cells and hybridized on Affymetrix microarrays if the RIN was M-bM-^IM-% 7.
2013-06-03 | E-GEOD-43365 | biostudies-arrayexpress
Project description:IntroductionThe Alarm Distress BaBy (ADBB) scale developed by Guedeney and Fermanian in 2001, is a validated screening tool designed for use by healthcare practitioners to identify infant social withdrawal. This study will explore the acceptability and feasibility of the use of the full ADBB scale and a modified ADBB (m-ADBB) scale as part of routine health visiting visits in England.Methods and analysisA mixed methods sequential exploratory design will be used. Five health visitors will be trained in using the ADBB scale and 20 in the m-ADBB scale, from two National Health Service sites in England. Qualitative semi-structured interviews will be carried out with health visitors after they receive the training and again 2 months after using the scales in routine family health visits. Quantitative data will also be collected from the same participants for a range of items during the study period. The theoretical framework of Normalisation Process Theory will underpin the study, to provide in-depth explanations of the implementation process. Qualitative data will be analysed using thematic analysis. Quantitative data will be analysed using descriptive analysis.Ethics and disseminationEthical approval was granted by the University of Oxford Departmental Research Ethics Committee. Dissemination of results will be via organisational websites, social media platforms, newsletters, professional networks, conferences and journal articles.
| S-EPMC10689357 | biostudies-literature
Project description:BackgroundPsoriasis is an inflammatory long-term condition involving comorbidities, unhealthy lifestyle and significant life impact. Patients' understanding of psoriasis is limited and support lacking. The Common-Sense Model of Self-Regulation of Health and Illness emphasizes the role of illness and treatment beliefs on coping and self-management. New 'Pso Well® ' patient materials informed by the model, addressed psoriasis as a long-term condition, medication management and lifestyle behaviours.ObjectivesTo investigate whether Pso Well® materials (i) broaden understanding of psoriasis without increasing anxiety; (ii) are acceptable; and (iii) comprise features that appear to effect change.MethodsThe Revised Illness Perceptions Questionnaire (IPQ-R modified) and the Hospital Anxiety and Depression Scale (HADS) were administered in patients before and after intervention. Numerical rating scales assessed perceptions of change in understanding and anxiety resulting from engagement with the materials. Qualitative interviews explored acceptability and perceived 'active ingredients'.ResultsFifty-five patients completed pre- and postintervention questionnaires (56% female; median age 59 years). Postintervention, a large effect size was indicated in two IPQ-R domains - illness coherence [t(55) = -3·48, P = 0·001 (two-tailed), η2 = 0·19] and personal control [t(55) = -2·98, P = 0·004 (two-tailed), η2 = 0·14] - and a medium effect in one, treatment control [t(55) = -2·08, P = 0·042 (two-tailed), η2 = 0·08]. HADS scores did not change. For numerical rating scales, 80% of participants reported increased understanding of psoriasis and none reported increased anxiety. Interviews with 19 patients indicated the materials were acceptable and usable. Factors reported to broaden understanding and promote engagement with self-management included linking of related disease aspects, personally relevant content and high-quality design.ConclusionsHigh-quality, theory-based psoriasis materials are acceptable to patients and can improve understanding and sense of control without increasing anxiety.
| S-EPMC5637913 | biostudies-literature
Project description:BackgroundEncouraging office workers to break up prolonged sedentary behavior (SB) at work with regular microbreaks can be beneficial yet challenging. The Internet of Things (IoT) offers great promise for delivering more subtle and hence acceptable behavior change interventions in the workplace. We previously developed an IoT-enabled SB intervention, called WorkMyWay, by applying a combination of theory-informed and human-centered design approaches. According to the Medical Research Council's framework for developing and evaluating complex interventions such as WorkMyWay, process evaluation in the feasibility phase can help establish the viability of novel modes of delivery and identify facilitators and barriers to successful delivery.ObjectiveThis study aims to evaluate the feasibility and acceptability of the WorkMyWay intervention and its technological delivery system.MethodsA mixed methods approach was adopted. A sample of 15 office workers were recruited to use WorkMyWay during work hours for 6 weeks. Questionnaires were administered before and after the intervention period to assess self-report occupational sitting and physical activity (OSPA) and psychosocial variables theoretically aligned with prolonged occupational SB (eg, intention, perceived behavioral control, prospective memory and retrospective memory of breaks, and automaticity of regular break behaviors). Behavioral and interactional data were obtained through the system database to determine adherence, quality of delivery, compliance, and objective OSPA. Semistructured interviews were conducted at the end of the study, and a thematic analysis was performed on interview transcripts.ResultsAll 15 participants completed the study (attrition=0%) and on average used the system for 25 tracking days (out of a possible 30 days; adherence=83%). Although no significant change was observed in either objective or self-report OSPA, postintervention improvements were significant in the automaticity of regular break behaviors (t14=2.606; P=.02), retrospective memory of breaks (t14=7.926; P<.001), and prospective memory of breaks (t14=-2.661; P=.02). The qualitative analysis identified 6 themes, which lent support to the high acceptability of WorkMyWay, though delivery was compromised by issues concerning Bluetooth connectivity and factors related to user behaviors. Fixing technical issues, tailoring to individual differences, soliciting organizational supports, and harnessing interpersonal influences could facilitate delivery and enhance acceptance.ConclusionsIt is acceptable and feasible to deliver an SB intervention with an IoT system that involves a wearable activity tracking device, an app, and a digitally augmented everyday object (eg, cup). More industrial design and technological development work on WorkMyWay is warranted to improve delivery. Future research should seek to establish the broad acceptability of similar IoT-enabled interventions while expanding the range of digitally augmented objects as the modes of delivery to meet diverse needs.
| S-EPMC10012006 | biostudies-literature
Project description:BackgroundVisualizations of illness and treatment processes are promising interventions for changing unhelpful perceptions and improving health outcomes. However, these are yet to be tested in patients with type 2 diabetes mellitus (T2DM).ObjectiveThis study assesses the cross-cultural acceptability and potential effectiveness of a brief visual animation of T2DM at changing unhelpful illness and treatment perceptions and self-efficacy among patients and family members in 2 countries, New Zealand and Saudi Arabia. Health care professionals' views on visualization are also explored.MethodsA total of 52 participants (n=39, 75% patients and family members and n=13, 25% health care professionals) were shown a 7-minute T2DM visual animation. Patients and family members completed a questionnaire on illness and treatment perceptions and self-efficacy before and immediately after the intervention and completed semistructured interviews. Health care professionals completed written open-ended questions. Means and 95% CIs are reported to estimate potential effectiveness. Inductive thematic analysis was conducted on qualitative data.ResultsAll participants rated the visual animation as acceptable and engaging. Four main themes were identified: animation-related factors, impact of the animation, animation as an effective format for delivering information, and management-related factors. Effect sizes (ranged from 0.10 to 0.56) suggested potential effectiveness for changing illness and treatment perceptions and self-efficacy among patients and family members.ConclusionsVisualizations are acceptable and may improve the perceptions of patients' with diabetes in a short time frame. This brief visual animation has the potential to improve current T2DM education. A subsequent randomized controlled trial to investigate the effects on illness and treatment perceptions, adherence, glycemic control, and unplanned hospital admission is being prepared.
| S-EPMC9399876 | biostudies-literature