Effects of a cancer genetics education programme on clinician knowledge and practice

Background: Many clinicians lack adequate knowledge about emerging standards of care related to genetic cancer risk assessment and the features of hereditary cancer needed to identify patients at risk.

Objective: To determine how a clinical cancer genetics education programme for community based clinicians affected participant knowledge and changed clinical practice.

Methods: The effects of the programme on participant knowledge and changes in clinical practice were measured through pre and post session knowledge questionnaires completed by 710 participants and practice impact surveys completed after one year by 69 out of 114 eligible annual conference participants sampled.

Results: Respondents showed a 40% average increase in specific cancer genetics knowledge. Respondents to the post course survey reported that they used course information and materials to counsel and refer patients for hereditary cancer risk assessment (77%), shared course information with other clinicians (83%), and wanted additional cancer genetics education (80%).

Conclusions: There was a significant immediate gain in cancer genetics knowledge among participants in a targeted outreach programme, and subset analysis indicated a positive long term effect on clinical practice. Clinician education that incorporates evidence based content and case based learning should lead to better identification and care of individuals with increased cancer risk.

     

A randomized controlled trial of geriatric screening and surveillance in general practice

A randomized controlled trial of geriatric screening and surveillance was undertaken on a practice population of 295 patients aged 70 years or more over a two-year period. In the screened group (145 patients) many social problems were found and a total of 380 medical conditions were reported during the study period, 144 (38 per cent) of which were previously undetected. Conditions found most frequently involved the circulatory, musculoskeletal and nervous systems; 67 per cent of the conditions found were manageable, half being improved and the remainder resolved completely.

The screening programme was found to increase the use of social and health services but it did also decrease the expected duration of stay in hospital.

Independent assessment of patients in the study and control groups at the end of the two-year period showed that the screening programme had made no significant impact on the prevalence of socio-economic, functional, and medical disorders affecting health.

We formed the firm impression that the study patients were made more comfortable (by control of pain) and less disabled, although there was no unequivocal objective evidence of this. They were, however, kept independent for longer.

The findings are discussed and a model of geriatric care is suggested combining conventional management on demand with comprehensive screening to identify the high-risk patients on whom care might need to be focussed.

     

Developing a training programme in patient-centred consulting for evaluation in a randomised controlled trial; diabetes care from diagnosis in British primary care

Aim: To develop a feasible/theoretically based training programme in patient-centred consulting, for evaluation in a randomised controlled trial of diabetes care from diagnosis. Methods: The programme was developed with four primary care teams and their patients in an action research framework, with observation of diabetes review consultations before and after training, and evaluated by questionnaire after each training session, among 23 general practitioners and 32 practice nurses from 21 practices in the trial. Results: The observation study identified opportunities and obstacles to introducing a patient-centred approach into daily practice, especially in relation to time management and skill needs. The modified training programme was rated highly by participating general practitioners and nurses. Conclusions: Developing training programmes with the help of participating primary care teams ensures relevance and feasibility. Patient-centred consulting demands a shift from habitual consulting patterns. Practitioners are implementing the approach in practice, and the impact on patients is now under evaluation in the randomised controlled trial.     

Nurse-led health coaching programme to improve hospital-to-home transitional care for stroke survivors: A randomised controlled trial

ObjectiveTo evaluate the effects of a nurse-led health coaching programme for stroke survivors and family caregivers in hospital-to-home transition care.MethodsA total of 140 dyads of stroke survivors and their family caregivers were recruited and randomly assigned to either the intervention group (received a 12-week nurse-led health coaching programme) or the usual care group. The primary outcome was self-efficacy, and secondary outcomes were quality of life (QoL), stroke-related knowledge, and caregiver-related burden. The outcomes were measured at baseline, 12 and 24 weeks.ResultsStroke survivors in the intervention group demonstrated a significant improvement in self-efficacy at 12 weeks (x?: 24.9, 95%CI: 20.2–29.6, p < 0.001) and at 24 weeks (x?: 23.9, 95%CI: 19.2–28.6, p < 0.001) compared to the usual care group. Findings also demonstrated significant increases in stroke survivors’ QoL, stroke-related knowledge, and reduction in unplanned hospital readmissions and caregiver-related burden. There were no statistically significant changes in other outcomes between the two groups.ConclusionThe nurse-led health coaching programme improved health outcomes for both stroke survivors and their caregivers.Practice ImpactionFindings from the study suggest that nurse-led health coaching should be incorporated into routine practice in hospital-to-home transitional care for stroke survivors and their caregivers.     

A community study of diabetes in Oxfordshire

A mailed questionnaire was used to identify people with diagnosed diabetes in a population of approximately 14,000. A response rate of 90 per cent was obtained and the prevalence of diabetes was found to be 0.8 per cent. The questionnaire method compared favourably with other methods of identifying diabetics in the area.

Eighty-two diabetics were interviewed and examined for diabetic complications and 55 of these completed a questionnaire on their attitudes to diabetes and its care.

The medical records of all 108 diabetics identified were examined. A greater proportion of patients who attended either a general practice mini-clinic or a hospital diabetic clinic had examination for complications recorded than patients attending their general practitioner in ordinary surgery time. Patients attending on demand were seen less often and had fewer observations recorded when they came.

Comparison of measures of control between hospital and general practice patients showed that hospital patients tended to be more tightly controlled even though most were on insulin and likely to have more severe diabetes.

Half of non-insulin diabetics and a quarter of those on insulin considered that their diabetes should be managed solely by their general practitioner.

This was a pilot study and caution should be exercised in interpreting results from comparatively small numbers. The study has since been extended to a larger population. f10sl60

     

Attaching community psychiatric nurses to general practice

A scheme for attachment of psychiatric nurses from hospital to group practice in Oxford is described. One community psychiatric nurse can work satisfactorily with eight general practitioners covering a population of about 18,000. From analysis of a working year, it is concluded that this arrangement improves the care of patients in the community by providing psychiatric help at times when it was previously unavailable or unacceptable.

The implications of such a scheme for the workings of the primary health care team and the hospital psychiatric service are considered, and a case is made for a further study involving a comparison between practices with and without the attachment of a community psychiatric nurse.

     

Health Professionals’ Attitudes Towards Using a Web 2.0 Portal for Child and Adolescent Diabetes Care: Qualitative Study

Background

The Internet, created and maintained in part by third-party apomediation, has become a dynamic resource for living with a chronic disease. Modern management of type 1 diabetes requires continuous support and problem-based learning, but few pediatric clinics offer Web 2.0 resources to patients as part of routine diabetes care.

Objectives

To explore pediatric practitioners’ attitudes towards the introduction of a local Web portal for providing young type 1 diabetes patients with interactive pedagogic devices, social networking tools, and locally produced self-care and treatment information. Opportunities and barriers related to the introduction of such systems into clinical practice were sought.

Methods

Twenty clinicians (seven doctors, nine nurses, two dieticians, and two social welfare officers) from two pediatric diabetes teams participated in the user-centered design of a local Web 2.0 portal. After completion of the design, individual semi-structured interviews were performed and data were analyzed using phenomenological methods.

Results

The practitioners reported a range of positive attitudes towards the introduction of a local Web 2.0 portal to their clinical practice. Most interviewees were satisfied with how the portal turned out, and a sense of community emerged during the design process and development of the portal’s contents. A complementary role was suggested for the portal within the context of health practice culture, where patients and their parents would be able to learn about the disease before, between, and after scheduled contacts with their health care team. Although some professionals expected that email communication with patients and online patient information would save time during routine care, others emphasized the importance of also maintaining face-to-face communication. Online peer-to-peer communication was regarded as a valuable function; however, most clinicians did not expect that the portal would be used extensively for social networking amongst their patients. There were no major differences in attitudes between different professions or clinics, but some differences appeared in relation to work tasks.

Conclusions

Experienced clinical practitioners working in diabetes teams exhibited positive attitudes towards a Web 2.0 portal tailored for young patients with type 1 diabetes and their parents. The portal included provision of third-party information, as well as practical and social means of support. The practitioners’ early and active participation provides a possible explanation for these positive attitudes. The findings encourage close collaboration with all user groups when implementing Web 2.0 systems for the care of young patients with chronic diseases, particularly type 1 diabetes. The study also highlights the need for efforts to educate clinical practitioners in the use of Web publishing, social networking, and other Web 2.0 resources. Investigations of attitudes towards implementing similar systems in the care of adults with chronic diseases are warranted.     

General practice in Croatia, Yugoslavia

The position and importance of general practice in the Yugoslavian Health Service is being reviewed in a study of the working conditions, the composition and relationship of the primary health care team, the workload, and the opinions of the patients in Croatia, Yugoslavia.

We found that many practices had barely half the recommended equipment, that the average workload was 40 patients a day, and that many general practitioners expected others to improve their organisation rather than undertaking it themselves.

Those general-practitioner teams which we rated highly were also the most popular with patients. The job satisfaction of nurses varied and was highest when the doctors in the team did not have a high need for status for themselves.

We consider general practice to be of crucial importance in the total system of health care in our country and believe that general practitioners should have the same status as specialists.

     

The relationship between the family doctor and the hospital

From this paper based on the opinions of hospital patients, a representative group of Dutch family doctors and of specialists, as well as on the results of an investigation in three practices of the Nijmegen University Department of General Practice, two conclusions can be drawn.

(1) The family doctor can fulfil an important role for his patients in hospital. This role arises from his function as a doctor to the family and is complementary to the technical specialist's work in hospital. The family doctor can therefore bridge the gap between hospital and home and between the patient and his family.

(2) A strict referral and hospital admission policy by the family doctor has important consequences and gives him a key position in health care. He can promote the shift from hospital-centred care to domiciliary-centred care which is now generally considered to be necessary.

It seems likely that such a strict referral system means a better quality of medical care for patients.

This is a priority of the first order, greater than that of perfecting hospital medical care, which will require an ever-increasing effort and cost for a decreasing group of patients.

     

Impact of family environment and support on adherence,metabolic control,and quality of life in adolescents with diabetes

Background: Diabetes is a common disease in pediatric populations. Family functioning has been related to child adaptation to diabetes. Purpose: To determine the impact of family factors on diabetes, particularly the influence of family support and family environment on adherence to treatment, quality of life, and metabolic control in Portuguese adolescents with type 1 diabetes, taking in consideration age, sex, duration of disease, and social class. Method: This study used a cross-sectional design. A sample of 157 Portuguese diabetic patients filled disease-specific measures on adherence and quality of life and family functioning measures. Hypotheses were that family support and an organized family environment (high cohesion and low conflict) would be positively associated with better adherence, metabolic control, and quality of life. Results: This study’s results confirmed that adherence was predicted by family support for females and lower-class patients while metabolic control was predicted by family conflict for upper-class patients. Quality of life was predicted by lack of family conflict and family social support for both males and females as well as lower-class patients. Conclusion: The results highlight the importance of studying family variables in adolescents’ diabetes care within the wider cultural factors affecting the patient.     

Family practice in evolution: progress, problems and projections

Family practice has developed in direct response to the public need for primary care with the elements of comprehensiveness, continuity and accessibility. This specialty represents a re-emphasis of the generalist role in medicine, with particular concern for the family as the unit of care. Since the American Board of Family Practice was formed nine years ago, the first phase of development has been completed. Teaching programs in family medicine have been effectively established at undergraduate and graduate levels throughout the country in both university and community settings. Refinement of teaching programs and initiation of a strong ongoing research effort are now required. The continued successful evolution of family practice as a foundation of primary care in the United States is essential to extend the highest possible quality of care to the entire population at a cost that can be afforded in a society with limited resources for health care.     

Cost analysis of transmural home care for terminal cancer patients

The economic implications of home care service programmes for oncology patients remain unclear. This quasi-experimental study investigated the costs of a transmural home care programme for terminal cancer patients and compared them to those of the standard care available. The programme intended to optimize communication, cooperation and coordination between the intra- and extra- mural health care organizations (transmural care). Complete sets of data could be retrieved for 57 of the 79 patients in the intervention group, and for 29 of the 37 patients in the control group. Comparison of the intervention and control group revealed significantly lower pharmaceutical and rehospitalization costs in the intervention group, whilst community nursing and home help costs were significantly higher. However, no significant difference could be found for total health care costs between the groups. In view of this, and that the programme has proved to have significantly positive effects on both the patient's and direct caregiver's quality of life, the installation of such programmes in every hospital with a multidisciplinary oncology unit is recommended.     

The contribution of family history to the burden of diagnosed diabetes,undiagnosed diabetes,and prediabetes in the United States: analysis of the National Health and Nutrition Examination Survey, 2009–2014

PurposeGiven the importance of family history in the early detection and prevention of type 2 diabetes, we quantified the public health impact of reported family health history on diagnosed diabetes (DD), undiagnosed diabetes (UD), and prediabetes (PD) in the United States.MethodsWe used population data from the National Health and Nutrition Examination Survey 2009–2014 to measure the association of reported family history of diabetes with DD, UD, and PD.ResultsUsing polytomous logistic regression and multivariable adjustment, family history prevalence ratios were 4.27 (confidence interval (CI): 3.57, 5.12) for DD, 2.03 (CI: 1.56, 2.63) for UD, and 1.26 (CI: 1.09, 1.44) for PD. In the United States, we estimate that 10.1 million DD cases, 1.4 million UD cases, and 3.9 million PD cases can be attributed to having a family history of diabetes.ConclusionThese findings confirm that family history of diabetes has a major public health impact on diabetes in the United States. In spite of the recent interest and focus on genomics and precision medicine, family health history continues to be an integral component of public health campaigns to identify persons at high risk for developing type 2 diabetes and early detection of diabetes to prevent or delay complications.     

The residency program in social medicine of Montefiore Medical Center: 37 years of mission-driven, interdisciplinary training in primary care, population health, and social medicine.

Founded in 1970 to train physicians to practice in community health centers and underserved areas, the Residency Program in Social Medicine (RPSM) of Montefiore Medical Center, Bronx, New York, has graduated 562 board-eligible family physicians, general internists, and pediatricians whose careers fulfill this mission. The RPSM was a model for federal funding for primary care residency programs and has received Title VII grants during most of its history. The RPSM has tailored its mission and structured its curriculum to promote a community and population orientation and to provide the requisite knowledge and skills for integrating social medicine into clinical practice. Six unique hallmarks of RPSM training are (1) mission-oriented resident recruitment/selection and self-management, (2) interdisciplinary collaborative training among primary care professionals, (3) community-health-center-based and community-oriented primary care education, (4) biopsychosocial and ecological family systems curriculum, (5) the social medicine core curriculum and projects, and (6) grant support through Title VII. These hallmark curricular, training, and funding elements, in which population health is deeply embedded, have been carefully evaluated, regularly revised, and empirically validated since the program's inception. Practice outcomes for RPSM graduates as leaders in and advocates for population health and the care of underserved communities are described and discussed in this case study.     

Transmural care: A new approach in the care for terminal cancer patients: its effects on re-hospitalization and quality of life

Despite their wishes, terminal cancer patients are frequently readmitted to hospitals. This appears in part to be due to poor communication amongst professional caregivers and/or the overburdening of their (informal) caregivers. This quasi-experimental study investigated the effects of a transmural home care programme on re-hospitalization, quality of life and place of death for terminal cancer patients. The programme intended to optimize communication, cooperation and coordination between intra- and extra-mural health care organizations (transmural care). Initial patient characteristics of the intervention group (n=79) matched those of the control group (n=37) well. When compared to the control group, which received the standard community care, patients in the intervention group underwent significantly less re-hospitalization during the terminal phase of their illness (5.8 versus 11.5 days; P<0.01) while the intervention contributed significantly positive to the patients' “physical” quality of life 1 month after the start of the intervention. A higher, but not significant (P=0.06) percentage of patients in the intervention group also died at home (81 versus 65%). The introduction of measures to enhance coordination and cooperation of intra- and extramural care, seems to be an improvement compared to standard community care.     

Family history and perceptions about risk and prevention for chronic diseases in primary care: A report from the Family Healthware™ Impact Trial

PurposeTo determine whether family medical history as a risk factor for six common diseases is related to patients' perceptions of risk, worry, and control over getting these diseases.MethodsWe used data from the cluster-randomized, controlled Family Healthware™ Impact Trial (FHITr). At baseline, healthy primary care patients reported their perceptions about coronary heart disease, stroke, diabetes, and breast, ovarian, and colon cancers. Immediately afterward, intervention group participants used Family Healthware™ to record family medical history; this web-based tool stratified familial disease risks. Multivariate and multilevel regression analyses measured the association between familial risk and patient perceptions for each disease, controlling for personal health and demographics.ResultsFor the 2330 participants who used Family Healthware™ immediately after providing baseline data, perceived risk and worry for each disease were strongly associated with family history risk, adjusting for personal risk factors. The magnitude of the effect of family history on perceived risk ranged from 0.35 standard deviation for ovarian cancer to 1.12 standard deviations for colon cancer. Family history was not related to perceived control over developing diseases. Risk perceptions seemed optimistically biased, with 48–79% of participants with increased familial risk for diseases reporting that they were at average risk or below.ConclusionsParticipants' ratings of their risk for developing common diseases, before feedback on familial risk, parallels but is often lower than their calculated risk based on family history. Having a family history of a disease increases its salience and does not change one's perceived ability to prevent the disease.     

Palliative care making a difference in rural Uganda,Kenya and Malawi: three rapid evaluation field studies

Background

Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa.

Methods

Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviewswith key informants, observationsof clinical encounters and the local health and social care context, and routine data from local reports and statistics.

Results

We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home.In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks.

Conclusions

Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.

     

Adolescents'' opinions about genetic risk information, prenatal diagnosis, and pregnancy termination

Advances in genetics create increasing possibilities of diagnosing and preventing genetic disease. In most countries, the community is poorly informed about the role of genetic factors in human disease and about genetic testing and its social, emotional, and ethical implications. School education about genetics may improve this situation. Students are, of course, the adults of the future and the potential users of the new genetic tests. To gain further insight into the perception of genetic risk of adolescents and their perception of the new genetic techniques and as a starting point for setting up an adequate information campaign in Flanders, we assessed the opinions and beliefs of students with regard to health, genetic diseases, genetic risk, and genetic testing.

A standardised interview and questionnaire were administered within the scope of the two yearly medical check up of 166 fifth grade students. They were randomly selected from the group of all fifth grade high school students in seven different schools.

This paper focuses on the attitudes of adolescents towards obtaining genetic information, towards prenatal diagnosis and pregnancy termination. Adolescents in Flanders are interested in being informed about genetic risks and genetic diseases and in making use of prenatal diagnosis because they want to make informed reproductive decisions in the future and to be emotionally prepared for the birth of an affected child. They adopt a critical attitude towards pregnancy termination. The association between these attitudes and several relevant factors was investigated. This showed significant correlations between some attitudes and general health related prevention, perceived burden of genetic diseases, the importance of the value “own health”, the perceived role of society, and the regularity of religious practice. Some points for special attention were formulated with regard to information campaigns for adolescents.

     

Evidence to the Royal Commission on the NHS

1. It is the right of everyone in the UK to have access to personal and continuing primary health care of a high standard (para. 4.1).

2. The primary health care service should be built on general practice (paras 2.3 to 2.10, 4.1 to 4.3).

3. The nature of the most important health problems today means inevitably that the main burden of care will fall on the primary health service (paras 3.2 to 3.7).

4. It follows that the NHS must be reorientated around primary health care; the functions and size of the hospital service will then depend on the responsibilities of the primary health care sector (para. 4.2).

5. It also follows that primary health care must attract a higher priority in the allocation of resources (paras 4.4, 5.2 to 5.8).

6. Setting standards of performance is a high priority for all the health professions and the NHS itself (paras 3.6, 3.7).

7. In medicine, professional standards will not improve unless medical education is radically reshaped by the implementation of the recommendations of the Committee of Enquiry into the Regulation of the Medical Profession (para. 5.4).

8. Inadequate care by some general practitioners today is acknowledged (paras 2.12, 2.13); the main causes are examined (para. 2.15) and remedies are suggested (paras 4.4, 5.4 to 5.6).

9. The special problems of primary care in parts of conurbations are described (paras 2.14 to 2.17); a proposal to deal with this exceptional situation is made (para. 5.7).

10. Primary health care should be provided normally by functionally integrated teams of general practitioners, nurses, health visitors and, where appropriate, social workers, supported by receptionists and secretarial staff (paras 2.4, 2.10).

11. Within the primary health care team ultimate responsibility must rest with general practitioners (para. 4.1).

12. To provide good primary health care we need:

i) Appropriate manpower (para. 5.2).

ii) Adequate premises (para. 5.3).

iii) Effective education (paras 5.4, 5.5).

iv) A modern record/information system (para. 5.6).

13. General practitioners should remain independent contractors so that patients have an independent medical adviser in a State dominated health service (para. 4.7).

14. The administration of the NHS should work on the principle that bureaucratic interventions between patients and the health professions should be kept to an absolute minimum (para. 4.4).

     

Chronic Obstructive Pulmonary Disease heterogeneity: challenges for health risk assessment,stratification and management

This article describes a Digital Health Framework (DHF), benefitting from the lessons learnt during the three-year life span of the FP7 Synergy-COPD project. The DHF aims to embrace the emerging requirements - data and tools - of applying systems medicine into healthcare with a three-tier strategy articulating formal healthcare, informal care and biomedical research. Accordingly, it has been constructed based on three key building blocks, namely, novel integrated care services with the support of information and communication technologies, a personal health folder (PHF) and a biomedical research environment (DHF-research). Details on the functional requirements and necessary components of the DHF-research are extensively presented. Finally, the specifics of the building blocks strategy for deployment of the DHF, as well as the steps toward adoption are analyzed. The proposed architectural solutions and implementation steps constitute a pivotal strategy to foster and enable 4P medicine (Predictive, Preventive, Personalized and Participatory) in practice and should provide a head start to any community and institution currently considering to implement a biomedical research platform.