Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes.

BACKGROUND: In the UK, demonstration of patient and public involvement (PPI) is now a funding requirement. Despite advice being available to researchers regarding PPI, levels of engagement are variable. Patient involvement has been at the core of the Leeds Psychosocial Oncology and Clinical Practice Research Group since 2007 when a local Research Advisory Group (RAG) was established. In addition, we work with experienced patient advocates from national groups. METHODS: The RAG is led by designated researchers who manage and communicate with members. The RAG is invited to twice yearly meetings with the full research team when study findings are disseminated and advice sought. The meetings are also an opportunity to socialise and thank members. Effective partnerships and engagement require good communication, building relationships over time and tailoring involvement to individuals' skills and experience. RESULTS: Patients have been involved in design, planning new projects and assisting with grant proposals; development, pilot testing of interview strategies and question generation, project steering groups and management teams, development of self-management advice for online patient portals; implementation, extensive beta testing of new questionnaire builder software to enable collection of online patient-reported outcomes (PRO) and study websites, cognitive interviews to develop PRO items; dissemination, co-authorship of papers and presentations, attendance/representation of the group at conferences. CONCLUSION: The involvement of patient advocates is integral to ensuring PRO development remains patient-centred. Having a co-operative, well-established local PPI group and nationally active patient collaborators has had a rewarding and significant impact on our research programmes.

Problem-based learning (PBL) and public health: an initial exploration of perceptions of PBL in Vietnam.

INTRODUCTION: Worldwide interest in problem-based learning (PBL) has grown in past decades. This article aims to evaluate the perceived effectiveness, appropriateness, benefits, and challenges attributed to the use of PBL in public health education in Vietnam with a view to providing recommendations for curricular design and future policy. METHODS: Teachers at 2 universities in Hanoi participated in group interviews, and students from these 2 universities completed Likert-style questionnaires. RESULTS: Students and teachers regarded PBL positively. However, there was consensus that hybrid models that used PBL alongside other methods are probably the most beneficial for public health education in Vietnam. Teachers discussed the educational and systematic advantages and difficulties associated with PBL. CONCLUSION: Themes arising from this analysis may be helpful in guiding future research-namely, regarding the application of PBL in low- and middle-income countries and in public health. Further exploration of the use of PBL hybrid models is discussed.

Motivation of university and non-university stakeholders to change medical education in Vietnam.

BACKGROUND: Both university and non-university stakeholders should be involved in the process of curriculum development in medical schools, because all are concerned with the competencies of the graduates. That may be difficult unless appropriate strategies are used to motivate each stakeholder. From 1999 to 2006, eight medical schools in Vietnam worked together to change the curriculum and teaching for general medical students to make it more community oriented. This paper describes the factors that motivated the different stakeholders to participate in curriculum change and teaching in Vietnamese medical schools and the activities to address those factors and have sustainable contributions from all relevant stakeholders. METHODS: Case study analysis of contributions to the change process, using reports, interviews, focus group discussions and surveys and based on Herzberg's Motivation Theory to analyze involvement of different stakeholders. RESULTS: Different stakeholders were motivated by selected activities, such as providing opportunities for non-university stakeholders to share their opinions, organizing interactions among university stakeholders, stimulating both bottom-up and top-down inputs, focusing on learning from each other, and emphasizing self-motivation factors. CONCLUSION: The Herzberg Motivation theory helped to identify suitable approaches to ensure that teaching topics, materials and assessment methods more closely reflected the health care needs of the community. Other medical schools undertaking a reform process may learn from this experience.

Community-university partnership: key elements for improving field teaching in medical schools in Vietnam.

INTRODUCTION: Medical education in many countries includes periods that students spend in the community. In Vietnam, a move towards more community-oriented teaching has increased the need for rural community-based education for medical students during recent years. At the same time, new policies and social changes have created difficulties for community-based education. The eight main medical schools have worked together since 1999 to improve their curriculum, including sharing and adopting new approaches in their field teaching programs. OBJECTIVE: To establish more systematic, integrated and participatory field teaching in rural communities in the curricula of eight medical schools, based on community-university partnerships. METHODS: Eight medical schools together analyzed their field teaching programs and identified issues still needing attention. A pilot intervention explored how to involve community and local health staff actively in field teaching programs. From the results of the workshop and the pilot intervention, plans were made for sets of activities to improve weaknesses. Feedback and evaluation surveys among local health staff and students who participated in field training were performed after 3 years' intervention, to check the appropriateness of the field teaching programs and methods. RESULTS: All eight schools had made improvements in selected aspects of their community-based education programs. There was still considerable variation in the programs but all were more systematic and better integrated into the revised curriculum. Stakeholders' concerns and interests related to field teaching were analyzed and taken into consideration when they were involved in field teaching. The community-university partnership has become a key element for field teaching in these medical schools. CONCLUSION: In the new social context of Vietnam, along with more community-based education periods, more active participation of all stakeholders is increasingly necessary to work towards more effective community-oriented training in Vietnamese medical schools.

The initial development of an item bank to assess and screen for psychological distress in cancer patients.

Psychological distress is a common problem among cancer patients. Despite the large number of instruments that have been developed to assess distress, their utility remains disappointing. This study aimed to use Rasch models to develop an item-bank which would provide the basis for better means of assessing psychological distress in cancer patients.An item bank was developed from eight psychological distress questionnaires using Rasch analysis to link common items. Items from the questionnaires were added iteratively with common items as anchor points and misfitting items (infit mean square >1.3) removed, and unidimensionality assessed.A total of 4914 patients completed the questionnaires providing an initial pool of 83 items. Twenty items were removed resulting in a final pool of 63 items. Good fit was demonstrated and no additional factor structure was evident from the residuals. However, there was little overlap between item locations and person measures, since items mainly targeted higher levels of distress. The Rasch analysis allowed items to be pooled and generated a unidimensional instrument for measuring psychological distress in cancer patients. Additional items are required to more accurately assess patients across the whole continuum of psychological distress.

Rasch analysis of the dimensional structure of the Hospital Anxiety and Depression Scale.

The Hospital Anxiety and Depression Scale (HADS) has been used extensively in cancer patients to identify psychological distress. Reports of the factor structure and screening performance of the instrument vary. Rasch models allow an assessment of the structure of a questionnaire by identifying item fit. Removal of misfitting items may improve both the dimensionality and efficacy of screening questionnaires. A Rasch analysis of the HADS-T and subscales was used to explore the factor structure, dimensionality and screening efficacy. A total of 1855 patients completed a touchscreen version of the HADS, including 381 patients who had received a psychiatric interview (SCAN/PSE). These data were analysed using Rasch models, and the screening efficacy at identifying cases of psychological distress and anxiety and depression evaluated. The results demonstrated that the structure of the HADS-T and subscales was unidimensional. Three items from the HADS-T, and one from each of the subscales demonstrated misfit. Screening efficacy for the HADS-T and subscales was modest. However, removal of misfitting items had little impact on screening, demonstrating that items could potentially be omitted, if required. The item range covered a narrow spectrum of psychological distress, predominantly higher levels of distress. Additional items have to be added if screening for moderate to mild distress is to be improved for cancer patients.

Development and evaluation of an instrument to assess social difficulties in routine oncology practice.

PURPOSE: To develop and preliminarily evaluate a Social Difficulties Inventory (SDI) for use in oncology practice. METHODS: Item generation from patients (n = 96), staff (n = 49) and the literature. Questions constructed and pre-tested (n = 42) resulting in a 22-item questionnaire. Psychometric evaluation (n = 271) assessed frequency of endorsement, factor structure, summated scales and construct validity followed by randomisation to criterion validity or test-retest arms. RESULTS: Items met preset frequency of endorsement criteria. Factor analysis revealed a four-factor structure, three clearly definable, (1) Physical ability, (2) Providing for the family and (3) Contact with others, explaining 45.8% variance. Summated scales developed from these demonstrated good reliability (Cronbach's alpha > 0.7) and were used to test and confirmed construct validity. Several comparators from the Life Events and Difficulties Schedule (LEDS) and Cancer Rehabilitation Evaluation System Short Form (CARES-SF) tested criterion validity and majority agreements were moderate to good. Test-retest reliability was good with most kappa values > 0.6. One item was eliminated resulting in a 21-item questionnaire. CONCLUSION: The SDI is relevant and easy to understand. Initial psychometric evaluation was encouraging. Ongoing work to evaluate the clinical meaning and utility of the instrument and to examine the relationships between SDI scores and clinical outcomes will provide guidance about its usefulness as an assessment tool in routine oncology practice.

Management of pertussis in a nurse at a special care baby unit.

A case of pertussis in a nurse at a special care baby unit prompted the identification of both neonates and healthcare staff with significant exposure to the index case. Respiratory tract samples were collected from all neonates involved and prophylactic erythromycin given. Only healthcare staff who developed symptoms were investigated and offered treatment. Though no secondary cases were identified in this instance, the importance of the early recognition of pertussis in adult healthcare workers is highlighted.

Feasibility and compliance of automated measurement of quality of life in oncology practice.

PURPOSE: Systematic quality-of-life (QOL) assessment may have value in oncology practice by increasing awareness of a wide range of issues, possibly increasing detection of psychologic morbidity, social problems, and changes in physical status, and improving care and its outcomes. However, logistic problems are substantial. Automated systems solve many of these problems. We field-tested the feasibility and compliance that can be achieved using a computer touchscreen system in two consecutive studies. PATIENTS AND METHODS: In study 1, a prospective cohort of 272 patients was offered QOL assessment at each clinic appointment for 6 months. In study 2, all patients (N = 1,291) were offered QOL assessment as part of clinic routine during a 12-week period. RESULTS: In study 1, 82% of patients agreed to take part, but over time, compliance was poor (median, 40%; mean, 43%) and deteriorated with longer follow-up. In study 2, the overall compliance was greatly increased (median, 100%; mean, 70%), and compliance was retained over multiple visits. In study 1, compliance was better in younger patients, males, and socially advantaged patients, but was not affected by the presence of depression or anxiety, or QOL. In the second study, building on experience in the first study, data collection and storage in the computer system was excellent, achieving 98% of collected data stored in one center. In general, patients were comfortable with the computers and the approach. Data collection on the wards was more difficult and less complete than in clinics, especially for patients undergoing acute admissions. CONCLUSION: Feasibility with higher compliance was demonstrated in study 2, in which the data collection was integrated into routine care, and can be improved with further technical initiatives and education of staff.

Social problems in oncology.

A study was undertaken to describe, evaluate and categorise the social problems experienced by cancer patients. Ninety-six adult cancer patients at all stages of disease participated in either a telephone focus group discussion, a face to face focus group or an individual interview which were tape recorded and transcribed. Six experts analysed the transcripts. A total of 32 social problems were identified categorized under eight headings plus four single items. The categories were: problems with (1) managing in the home, (2) health and welfare services, (3) finances, (4) employment, (5) legal matters, (6) relationships, (7) sexuality and body image and (8) recreation. Problems with relationships and communication were the most frequently reported with financial, employment, body image and domestic problems also being widely endorsed. Female groups, younger patient groups and groups where the aim of treatment was palliative reported more social problems than other groups. Social problems are common and important to cancer patients. The social problems identified in this study will contribute to an item pool generated for developing a Social Problems Inventory that may be included in patient centred assessment as part of routine oncology practice.

Is methicillin-resistant Staphylococcus aureus (MRSA) contamination of ward-based computer terminals a surrogate marker for nosocomial MRSA transmission and handwashing compliance?

A survey of two acute district general hospitals (A and B) was undertaken to investigate the extent of methicillin-resistant Staphylococcus aureus (MRSA) contamination of ward-based computer terminals. Of 25 terminals examined, MRSA was identified in six (24%). Environmental contamination was of a low level. Five of the MRSA positive terminals were from hospital A which had a significantly higher rate of MRSA transmission compared to hospital B (1.02 vs. 0.49 new inpatient MRSA cases per 100 hospital admissions for 1999). MRSA containment and handwashing policies were similar at both hospitals, though only hospital B actively audited handwashing compliance and had a 44% higher rate of paper towel usage per hospital bed. Ward-based computer terminals pose a low risk of MRSA cross-infection. This risk can be further reduced if all staff wash their hands before and after patient contact.

Detecting social problems in cancer patients.

Diagnosis of and treatment for cancer may not only create physical and emotional difficulties for patients but may also have an impact on social aspects of patients' lives. Screening for social problems has not become part of routine oncology practice. This may be due to lack of a suitable questionnaire. This paper presents a psychometric analysis of the Problems Checklist with a view to assessing its usefulness as a screening tool for social problems in oncology. Evaluation was undertaken using data from an earlier study of 505 patients who completed the checklist. Frequency of endorsement, missing values, factor analysis and reliability and validity analysis of the summated scales were carried out. Missing data rates ranged from 4 to 18% over the 16 items. Fourteen items were well endorsed. Factor analysis produced a four-factor structure with components labelled daily living, relationships, economics and emotions. Reliability and validity tests endorsed the factor structure with the components on economics and emotions being particularly credible. Difficulties with relationships are harder to measure and results from the analysis suggest that this is an area that warrants further investigation. The checklist is a useful tool for highlighting problems. As a tool for screening for social problems it has some limitations.

Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires.

PURPOSE: To evaluate alternative automated methods of collecting data on quality of life (QOL) in cancer patients. After initial evaluation of a range of technologies, we compared computer touch-screen questionnaires with paper questionnaires scanned by optical reading systems in terms of patients' acceptance, data quality, and reliability. PATIENTS AND METHODS: In a randomized cross-over trial, 149 cancer patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, version 2.0 (EORTC QLQ-C30), and the Hospital Anxiety and Depression Scale (HADS) on paper and on a touch screen. In a further test-retest study, 81 patients completed the electronic version of the questionnaires twice, with a time interval of 3 hours between questionnaires. RESULTS: Fifty-two percent of the patients preferred the touch screen to paper; 24% had no preference. The quality of the data collected with the touch-screen system was good, with no missed responses. At the group level, the differences between scores obtained with the two modes of administration of the instruments were small, suggesting equivalence for most of the QOL scales, with the possible exception of the emotional, fatigue, and nausea/vomiting scales and the appetite item, where patients tended to give more positive responses on the touch screen. At the individual patient level, the agreement was good, with a kappa coefficient from 0.57 to 0.77 and percent global agreement from 61% to 97%. The electronic questionnaire had good test-retest reliability, with correlation coefficients between the two administrations from 0.78 to 0.95, kappa coefficients of agreement from 0.55 to 0.90, and percent global agreement from 56% to 100%. CONCLUSION: Computer touch-screen QOL questionnaires were well accepted by cancer patients, with good data quality and reliability.

Changes in cellular response to mycobacterial antigens and cytokine production patterns in leprosy patients during multiple drug therapy.

Changes in Mycobacterium leprae-induced lymphoproliferative responses and mediator release by leprosy patients' lymphocytes were followed during multiple drug therapy (MDT). At the time of diagnosis, multibacillary (MB) patients who did not develop reactions responded to both sonicated M. leprae and synthetic disaccharide coupled to bovine serum albumin (ND-BSA) antigens, but those who would later develop reactions did not respond, even in the presence of added cytokines. The paucibacillary (PB) group initially had high responses to sonicated M. leprae but no response to ND-BSA, even in the presence of added cytokines. In the first year of treatment, the supernatants of PB patients' cell cultures contained factors that enhanced the phytohaemagglutinin (PHA) response of normal cells. In contrast, those MB patients who did not develop reactions at a later stage produced culture supernatants that were inhibitory. Interestingly, the MB patients who later developed reactions during treatment, and did not initially respond to M. leprae, produced supernatants containing enhancing factors, like those of the PB group. Later on in the treatment, all patients had the same patterns: when response to M. leprae decreased from its highest level, inhibitory factors were produced. Further studies revealed that the supernatants which inhibited the PHA response of normal cells contained the active form of transforming growth factor-beta 1, (TGF-beta 1), whatever the disease type or treatment status of the donor. These TGF-beta 1 levels correlated directly with the degree of inhibition. Similarly supernatants that neither inhibited nor enhanced PHA responses contained the highest levels of interleukin-10 (IL-10), while those from treated patients that enhanced contained the lowest levels of interleukin-4 (IL-4) and interferon-gamma (IFN-gamma). These cytokine correlations transcended the conventional disease classification, and imply that all patients pass through a sequence of patterns of immune response during treatment. These treatment-induced changes may explain occasional reports of response patterns at variance with the 'immunological spectrum' of leprosy.

Successful 1-stage exchange total knee arthroplasty for fungal infection.

The case of a 75-year-old woman treated by 1-stage exchange arthroplasty for fungal infection of a total knee arthroplasty is reported.