Dataset Information

Exploring patients' experience and perception of being diagnosed with bladder cancer: a mixed-methods approach.

ABSTRACT: OBJECTIVE:To determine patient experience and perception following a diagnosis of non-muscle-invasive bladder cancer (NMIBC). PATIENT AND METHODS:Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed-methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief-IPQ) and (ii) semi-structured interviews to explore patients' experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis. RESULTS:A total of 213 patients completed the Brief-IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0-5]) and were not particularly affected emotionally (median [IQR] score 3 [1-6]) with a minimal effect to their daily life (median [IQR] score 2 [0-5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3-8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2-5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3-10]). A significant association with a lower personal control of the disease (P < 0.05) and a poorer understanding of the management of NMIBC (P < 0.05) was seen in patients aged >70 years. Many patients were uncertain about the cause of bladder cancer. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis. CONCLUSION:Patients with NMIBC have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and TURBT. Health awareness about bladder cancer remained poor with a significant number of patients unaware of the causes of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.

SUBMITTER: Tan WS

PROVIDER: S-EPMC7318301 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Exploring patients' experience and perception of being diagnosed with bladder cancer: a mixed-methods approach.

Tan Wei Shen WS Teo Chin Hai CH Chan Delcos D Ang Kar Mun KM Heinrich Malgorzata M Feber Andrew A Sarpong Rachael R Williams Norman N Brew-Graves Chris C Ng Chirk Jenn CJ Kelly John J

BJU international 20200212 5

<h4>Objective</h4>To determine patient experience and perception following a diagnosis of non-muscle-invasive bladder cancer (NMIBC).<h4>Patient and methods</h4>Patients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed-methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief-IPQ) and (ii) semi-structured interviews to explore patients' experience of ...[more]

PMID: 31975539

Similar Datasets

Project description:BackgroundHigher education institutions need to put change management as a pivotal part of their strategy. The challenge is to effectively contextualize existing change management models to the respective work environment. Failing to properly adapt existing models to match the intricacies of the environment could lead to plenty of setbacks. For such a contextualization to take place, gauging employees' engagement and satisfaction becomes of paramount importance. As such, the overall purpose of the current study is to explore the perception of employees of a medical and health sciences university in Middle East and North Africa (MENA) region, in relation to change management and agility, and to showcase how the captured perspectives can be systemically interpreted to inform decision-making in the context of the study.MethodThis research study relied on a sequential mixed methods design, which started with an exploration of the perception of Mohammed Bin Rashid University of Medicine and Health Sciences (MBRU) leaders. Qualitative data was collected through a focus group session and was inductively analysed (based on constructivist epistemology). The output of the qualitative analysis contributed to the development of the quantitative data collection tool. The quantitative data was analysed by SPSS-version-27.FindingsThe qualitative analysis generated three key themes: Trigger, Execution, and Results, along with a thorough outline of lessons learned and opportunities for improvement. The Cronbach's Alpha reliability score was 92.8%. The percentage of the total average of agreement was 72.3%, and it appeared that 83.2% of the variance can be explained by the instrument (p<0.001).ConclusionThe current study generated a novel conceptual framework that can be leveraged by educational leadership and administration to reinforce their decisions and optimize their agility in terms of managing change. The study also introduces a data collection tool which captures the perception of higher education stakeholders regarding the way their respective institutions handle change. This tool proved to be reliable and valid in the context of the study.

Project description:BackgroundOptimizing patients' total hip and knee arthroplasty (THA/TKA) experience is as crucial for providing high quality care as improving safety and clinical effectiveness. Yet, little evidence is available on patient experience in standard-inpatient and enhanced recovery after surgery (ERAS)-outpatient programs. Therefore, this study aimed to gain a more in-depth understanding of the patient experience of ERAS-outpatient programs in comparison to standard-inpatient programs.MethodsWe conducted a convergent mixed methods study of 48 consecutive patients who experienced both standard-inpatient and ERAS-outpatient THA/TKA contralaterally. A reflective thematic analysis was conducted based on data collected via a questionnaire. Bivariate correlations between the patient experience and patients' characteristics, clinical outcomes and care components satisfaction were performed. Then, the quantitative and qualitative data were integrated together.ResultsThe theme Support makes the difference for better and for worse was identified by patients as crucial to their experience in both joint replacement programs. On the other hand, patients identified 3 themes distinguishing their ERAS-outpatient from their standard-inpatient experience: 1) Minimizing inconvenience, 2) Home sweet home and 3) Returning to normal function and activities. Potential optimization expressed by patients were to receive more preoperative information, additional postoperative rehabilitation sessions, and ensuring better coherence of care between hospital and home care teams. Weak to moderate positive and statistically significant correlations were found between patients' THA/TKA experience and satisfaction with pain management, hospital stay, postoperative recovery, home care, and overall results (rs = + [0.36-0.66], p-value < 0.01).ConclusionWhatever the perioperative program, the key to improving patients' THA/TKA experience lies in improving support throughout the care episode. However, compared to standard-inpatient care, the ERAS-outpatient program improves patients' experience by providing dedicated support in postoperative care, reducing postoperative inconvenience, optimizing pain management, returning home sooner, and recovering and regaining function sooner. Patients' THA/TKA experience could further be enhanced by optimizing the information provided to the patient, the rehabilitation program and the coherence between care teams.

Project description:BackgroundWorld Health Organisation has described obesity as one of the most neglected public health issues. Initially, obesity was only a problem in high-income countries; however, at present, it is rising in middle and low-income countries as well, rapidly in India, especially in the urban areas. In the light of the increasing prevalence of obesity in India, it was worthwhile to study perception, risk factors and health behaviours in adult obesity holistically.MethodsThis study resorted to a concurrent mixed methods approach, collecting and combining quantitative survey (n = 120) and qualitative interview data (n = 18). Female and male aged 25-54 years with a waist circumference of 80 cm and 90 cm or higher, respectively, and a BMI of 25 or higher were selected from Kolkata, India. Kolkata was chosen as the study area since it ranked 7th out of 640 districts, the highest among the five major urban cities in India, with around 41% of the female and 43% of the male population aged 15-49 years with a BMI of 25 or higher.ResultsParticipants confirmed that lifestyle was one of the main reasons for obesity. They believed that family history, social relations, behavioural factors, urbanisation, and time-poor were significant risk factors of obesity. Interview participants expanded that technology, lack of health education and self-care, and digital marketing of food influenced the risk of obesity. Participants confirmed that they wanted to lose weight to feel healthier. Most respondents claimed that they engaged in lightly to moderate-intensity physical activity. However, a discrepancy in opinion was observed between survey responses and interview participants' views on dietary behaviours. Participants confirmed that they rarely consulted health professionals and that the family had a minimal role in preventing obesity. Interview participants expanded that people should make better lifestyle choices at an individual level to prevent obesity.ConclusionsHealth education is fundamental. Making better lifestyle choices is crucial, which would help increase the lifespan and health span and decrease the risk of diseases. In addition, social support and better policies are required to prevent the disease and any related complications.

Project description:Objective: Contemporary healthcare requires physicians to have well developed ethical judgment skills in addition to excellent clinical skills. However, no consensus has been reached on how to best teach ethical judgment skills during medical training. Previous studies revealed inconclusive results and applied varying theoretical frameworks. To date, the students' perspectives on their development in ethical judgment has received less attention. Better insights in the learners' experiences can help to improve educational interventions in medical ethics. Methods: A vignette featuring a challenging case with opposing views between a patient's parents and a physician followed by a questionnaire was presented to a cohort of medical students at a German medical school at three points in time during their medical training (Year 1, 2 and 5). The questionnaire included closed and open-ended questions addressing the participant's preferred, hypothetical actions, their reasoning as well as the resources informing their reasoning. Content analysis was used for qualitative data; frequencies and percentages were used to describe quantitative findings. Results: The response rate remained stable (28%) over the study period. Participants' responses changed overtime. Accepting parents' autonomy in the decision-making process was the majority standpoint of students in year 1 and 2 and became less often cited in year 5 (Year 1/2/5: 68/67/48%). On the contrary, not readily following the parents' decision for medical reasons was a minority standpoint in year 1 and became more prevalent over time (year 1/2/5: 12/17/42%). Judgments were only partly based on ethics training. Instead, participants drew on experiences from their clinical clerkships and their personal lives. Throughout the study, participants did not feel well-prepared to make a judgment in the case (Average 2.7 on a Likert-Scale; 1=very well prepared, 4=very poor). Conclusions: Over the course of their medical training, the participants seemed to increasingly frame the presented vignette as a medical problem. To optimize the development of ethical judgment teaching of ethics should be more integrated in clinical teaching. In addition to the analysis of rare and extreme cases, teaching ethics should also expand on challenges students and junior doctors commonly encounter themselves to promote ethical sensitivity and confidence in students.

Project description:BackgroundNearly three in four U.S. medical students graduate with debt in six-figure dollar amounts which impairs students emotionally and academically and impacts their career choices and lives long after graduation. Schools have yet to develop systems-level solutions to address the impact of debt on students' well-being. The objectives of this study were to identify students at highest risk for debt-related stress, define the impact on medical students' well-being, and to identify opportunities for intervention.MethodsThis was a mixed methods, cross-sectional study that used quantitative survey analysis and human-centered design (HCD). We performed a secondary analysis on a national multi-institutional survey on medical student wellbeing, including univariate and multivariate logistic regression, a comparison of logistic regression models with interaction terms, and analysis of free text responses. We also conducted semi-structured interviews with a sample of medical student respondents and non-student stakeholders to develop insights and design opportunities.ResultsIndependent risk factors for high debt-related stress included pre-clinical year (OR 1.75), underrepresented minority (OR 1.40), debt $20-100 K (OR 4.85), debt >$100K (OR 13.22), private school (OR 1.45), West Coast region (OR 1.57), and consideration of a leave of absence for wellbeing (OR 1.48). Mental health resource utilization (p = 0.968) and counselors (p = 0.640) were not protective factors against debt-related stress. HCD analysis produced 6 key insights providing additional context to the quantitative findings, and associated opportunities for intervention.ConclusionsWe used an innovative combination of quantitative survey analysis and in-depth HCD exploration to develop a multi-dimensional understanding of debt-related stress among medical students. This approach allowed us to identify significant risk factors impacting medical students experiencing debt-related stress, while providing context through stakeholder voices to identify opportunities for system-level solutions.

Project description:OBJECTIVE:The aim of this study is to explore the experiences of patients with primary bone cancer. DESIGN:Qualitative study design using semistructured interviews and focus groups. SETTING:Hospitals across the UK and recruitment through UK sarcoma charities and support groups. METHODS:Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis. PARTICIPANTS:Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%). RESULTS:The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent. CONCLUSIONS:This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.

Dataset Information

Exploring patients' experience and perception of being diagnosed with bladder cancer: a mixed-methods approach.

Publications

Exploring patients' experience and perception of being diagnosed with bladder cancer: a mixed-methods approach.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets