The use of telehealth for diabetes management: a qualitative study of telehealth provider perceptions

BACKGROUND: Monitoring and Messaging Devices (MMDs) are telehealth systems used by patients in their homes, and are designed to promote patient self-management, patient education, and clinical monitoring and follow-up activities. Although these systems have been widely promoted by health care systems, including the Veterans Health Administration, very little information is available on factors that facilitate use of the MMD system, or on barriers to use. METHODS: We conducted in-depth qualitative interviews with clinicians using MMD-based telehealth programs at two Veterans Affairs Medical Centers in the Midwestern United States. RESULTS: Findings suggest that MMD program enrollment is limited by both clinical and non-clinical factors, and that patients have varying levels of program participation and system use. Telehealth providers see MMDs as a useful tool for monitoring patients who are interested in working on management of their disease, but are concerned with technical challenges and the time commitment required to use MMDs. CONCLUSION: Telehealth includes a rapidly evolving and potentially promising range of technologies for meeting the growing number of patients and clinicians who face the challenges of diabetes care, and future research should explore the most effective means of ensuring successful program implementation

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

<p>Abstract</p> <p>Background</p> <p>The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated.</p> <p>Methods/Design</p> <p>The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007.</p> <p>Discussion</p> <p>Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. </p> <p><b>Trial registration</b>: The study was registered at ‘current controlled trials (CCT)’, registration number: ISRCTN78021852.</p

Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives

<p>Abstract</p> <p>Background</p> <p>ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.</p> <p>Methods/Design</p> <p>The study has mixed methods: it's longitudinal, consisting of a quantitative cohort-study which provides a framework for predominantly qualitative sub-studies. The members of the cohort are persons owning an AD, recruited through two Dutch associations who provide the most common standard ADs in the Netherlands, the NVVE (Right to Die-NL), of which 5561 members participate, and the NPV (Dutch Patient Organisation), of which 1263 members participate. Both groups were compared to a sample of the Dutch general public. NVVE-respondents are more often single, higher educated and non-religious, while amongst NPV-respondents there are more Protestants compared to the Dutch public. They are sent a questionnaire every 1,5 year with a follow-up of at least 7,5 years. The response rate after the second round was 88% respectively 90% for the NVVE and NPV. Participants were asked if we were allowed to approach close-ones after their possible death in the future. In this way we can get insight in the actual use of ADs at the end of life, also by comparing our data to that from the Longitudinal Aging Study Amsterdam, whose respondents generally do not have an AD.</p> <p>Discussion</p> <p>The cohort is representative for people with an AD as is required to study the main research questions. The longitudinal nature of the study as well as the use of qualitative methods makes it has a broad scope, focusing on the whole course of decision-making involving ADs. It is possible to compare the end of life between patients with and without an AD with the use of data from another cohort.</p

Development of a heart failure filter for Medline: an objective approach using evidence-based clinical practice guidelines as an alternative to hand searching

<p>Abstract</p> <p>Background</p> <p>Heart failure is a highly debilitating syndrome with a poor prognosis primarily affecting the elderly. Clinicians wanting timely access to heart failure evidence to provide optimal patient care can face many challenges in locating this evidence.</p> <p>This study developed and validated a search filter of high clinical utility for the retrieval of heart failure articles in OvidSP Medline.</p> <p>Methods</p> <p>A Clinical Advisory Group was established to advise study investigators. The study set of 876 relevant articles from four heart failure clinical practice guidelines was divided into three datasets: a Term Identification Set, a Filter Development Set, and a Filter Validation Set. A further validation set (the Cochrane Validation Set) was formed using studies included in Cochrane heart failure systematic reviews. Candidate search terms were identified via word frequency analysis. The filter was developed by creating combinations of terms and recording their performance in retrieving items from the Filter Development Set. The filter's recall was then validated in both the Filter Validation Set and the Cochrane Validation Set. A precision estimate was obtained post-hoc by running the filter in Medline and screening the first 200 retrievals for relevance to heart failure.</p> <p>Results</p> <p>The four-term filter achieved a recall of 96.9% in the Filter Development Set; 98.2% in the Filter Validation Set; and 97.8% in the Cochrane Validation Set. Of the first 200 references retrieved by the filter when run in Medline, 150 were deemed relevant and 50 irrelevant. The post-hoc precision estimate was therefore 75%.</p> <p>Conclusions</p> <p>This study describes an objective method for developing a validated heart failure filter of high recall performance and then testing its precision post-hoc. Clinical practice guidelines were found to be a feasible alternative to hand searching in creating a gold standard for filter development. Guidelines may be especially appropriate given their clinical utility. A validated heart failure filter is now available to support health professionals seeking reliable and efficient access to the heart failure literature.</p

Dwarf Galaxies of the Local Group

The Local Group (LG) dwarf galaxies offer a unique window to the detailed properties of the most common type of galaxy in the Universe. In this review, I update the census of LG dwarfs based on the most recent distance and radial velocity determinations. I then discuss the detailed properties of this sample, including (a) the integrated photometric parameters and optical structures of these galaxies, (b) the content, nature and distribution of their ISM, (c) their heavy-element abundances derived from both stars and nebulae, (d) the complex and varied star-formation histories of these dwarfs, (e) their internal kinematics, stressing the relevance of these galaxies to the dark-matter problem and to alternative interpretations, and (f) evidence for past, ongoing and future interactions of these dwarfs with other galaxies in the Local Group and beyond. To complement the discussion and to serve as a foundation for future work, I present an extensive set of basic observational data in tables that summarize much of what we know, and what we still do not know, about these nearby dwarfs. Our understanding of these galaxies has grown impressively in the past decade, but fundamental puzzles remain that will keep the Local Group at the forefront of galaxy evolution studies for some time.Comment: 66 pages; 9 figures; 8 table

Promoting advance planning for health care and research among older adults: A randomized controlled trial

<p>Abstract</p> <p>Background</p> <p>Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.</p> <p>Methods/Design</p> <p>Dyads (<it>n </it>= 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled <it>My Preferences </it>that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about <it>My Preferences</it>. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.</p> <p>Discussion</p> <p>This study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.</p> <p>Trial Registration</p> <p><a href="http://www.controlled-trials.com/ISRCTN89993391">ISRCTN89993391</a></p

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study

Abstract Background Heart failure is an emerging challenge for Sub Saharan Africa. However, research on patients’ needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya. Methods We purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers. Interviews were recorded, transcribed into English and analyzed using a thematic approach, assisted by Nvivo software package. Results Forty-four interviews were conducted. Patients experienced physical, psychosocial, spiritual and financial distress. They also had unmet needs for information about their illness, how it would affect them and how they could get better. Patients experience of and their interpretation of symptoms influenced health care seeking. Patients with acute symptoms sought care earlier than those with more gradual symptoms which tended to be normalised as part of daily life or assumed to be linked to common treatable conditions. Nearly all patients expected to be cured and were frustrated by a progressive illness poorly responsive to treatment. Accumulating costs was a barrier to continuity of care and caused tensions in social relationships. Patients valued information on the nature of their illness, prognosis, self-care, lifestyle changes and prevention strategies, but this was rarely available. Conclusions This is the first in-depth study to explore the experiences of people living with advanced heart failure in Kenya. This study suggests that patients would benefit from holistic care, such as a palliative approach that is aimed at providing multidimensional symptom management. A palliative approach to services should be provided alongside chronic disease management aimed at primary prevention of risk factors, and early identification and initiation of disease modifying therapy. Further research is needed to determine best practice for integrating palliative care for people living and dying with heart failure

Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals

Abstract Background The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients’ and health care professionals’(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients’ and HPs’ views of HF patients’ needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. Methods Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. Results Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. Conclusion Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care

The Importance of Spirituality in African-Americans' End-of-Life Experience

A profound and moving spirituality provided emotional and psychological support for most terminally ill patients at Grady Memorial Hospital. The authors were able to trace the roots of these patients' spirituality to core beliefs described by African-American theologians. Truly bedrock beliefs often reflected in conversations with the patients at Grady included the providence of God and the divine plan for each person's life. Patients felt an intimate relationship to God, which they expressed through prayer. Importantly, almost all patients were willing to share their beliefs with the authors in long bedside interviews. This willingness to share indicates that physicians can learn about and validate such patients' spiritual sources of support