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1.
Yuri Quintana Bradley Crotty Darren Fahy Lewis Lipsitz Roger B. Davis Charles Safran 《BMC medical informatics and decision making》2018,18(1):105
Background
Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults’, over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.Methods
This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.Discussion
Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.2.
Background
Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived.Methods
We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient’s enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches.Results
Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had.Conclusion
Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being “cared for”. However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families.3.
Background
This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges.Methods
Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’Results
The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure.Conclusions
This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.4.
Funda Erol Cipe Cigdem Aydogmus Nina K. Serwas Gonca Keskindemirci Kaan Boztuğ 《Journal of clinical immunology》2018,38(3):273-277
Purpose
Adenosine deaminase 2 (ADA2) have been reported to cause vasculitic diseases and immunodeficiency recently. Patients present with stroke episodes and rashes mimicking polyarteritis nodosa (PAN). We report a patient who has been followed up with severe neutropenia and found an unexpectedly revealed novel mutation in CECR1 affecting ADA2.Methods
We reviewed medical records and clinical history of the patient. No mutations in other known neutropenia genes such as ELA, G6PC3, HAX1, AP3B1, LAMTOR2, VPS13B, VPS45, GFI1, JAGN1, or WAS could be detected. Sanger sequencing was used to confirm the genetic variants in the patient and relatives.Results
Genetic analysis by exome sequencing revealed a novel mutation in the gene CECR1 (c.G962A; p.G321E) which segregated perfectly in the relatives.Conclusion
This is the first DADA2 patient presenting with severe neutropenia. We suggest that in patients with unexplained cytopenias combined with immunodeficiency, fevers of unknown origin and high inflammation markers, DADA2 should be considered.5.
Background
Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services.Methods
Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically.Results
189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful.Conclusions
The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.6.
Background
As the primary informal caregiver for cancer patients, spousal caregivers are a population at a high risk of hidden morbidity. The factors impacting couples coping with cancer are complex, and within spousal caregiver-patient dyads the impact is mutual. The aim of this study is to explain the process that led to the development of an acceptable, feasible, and potentially effective ‘Caring for Couples Coping with Cancer “4Cs” Programme’ to support couples coping with cancer as the unit of intervention in China.Methods
The Medical Research Council’s (MRC) framework for developing and evaluating complex interventions was adopted to develop an intervention for couples coping with cancer. Three steps were taken in the process of developing the 4Cs programme, namely: (1) identifying the evidence base by conducting a series of extensive reviews of the relevant literature and conducting a focus group study; (2) identifying/developing a theory by proposing a preliminary Live with Love Conceptual Framework ‘P-LLCF’ for cancer couple dyads; and (3) modelling the process and outcomes of the 4Cs programme.Results
The programme that was developed is comprised of six individual sessions to be delivered by the researcher/therapists over 6 weeks. The main contents of the sessions of the 4Cs programme are: primary stressors (section 1); secondary stressors (section 2); dyadic mediator (section 3); dyadic appraisal (section 4); dyadic coping (section 5); and a programme overview (section 6). The emphasis of the programme is on supporting couples coping with cancer. A booklet was developed to provide the participants with easy access to written information about their common concerns in caring for loved ones with cancer.Conclusions
Guided by the MRC guidelines, a potentially effective, feasible, and acceptable 4Cs programme aimed at supporting couples coping with cancer as a dyad was developed. Future research is needed to pilot and evaluate the feasibility, modelling, and outcomes of this 4Cs programme.7.
Background
Dementia is a major public health problem that poses an increasing burden on the health and wealth of societies worldwide. Because the efficacy of current treatments is limited, increasing efforts are required to prevent the diseases that cause dementia.Discussion
We consider the evidence that lifelong prevention strategies may be an effective way to tackle the national burden of dementia in the absence of a cure. The links between lifestyle and cardiovascular disease are widely understood and accepted, but health professionals and patients remain unconvinced about the extent to which risk for dementia can be modified. However, there is strong evidence that at least half of risk for dementia is attributable to lifestyle factors such as diet, exercise and smoking. Moreover, the disease processes that result in dementia develop over several decades, implying that attempts to ameliorate them need to start early in life. Some modifiable risk factors for dementia act from the earliest stages of life, including in utero.Summary
Rebalancing efforts from the development of treatments to increased emphasis on prevention may be an alternative means to reducing the impact of dementia on society.8.
G. David Batty Bruna Galobardes John M. Starr Mona Jeffreys George Davey Smith Tom C. Russ 《Journal of negative results in biomedicine》2016,15(1):19
Background
Recent large-scale studies suggest that obesity and overweight may confer protection against future dementia. This observation could, however, be generated by reverse causality. That is, weight loss in the incipient phase of dementia ascribed to diminished self-care, including sub-optimal nutrition, would have the effect of generating such an inverse association. One approach to circumventing this problem would be to measure weight in a population which is young enough to be free of the symptoms of dementia which is then followed up for dementia occurrence over many decades.Methods
In a prospective cohort study, body mass index, and other potential risk factors, were measured in 9547 male university undergraduates (mean age 20.5 years) in 1948–68 who were then linked to national mortality registers.Results
Of 2537 deaths over a mean of 50.6 years follow up, 140 were ascribed to dementia. There was no association between overweight and future dementia deaths (age-adjusted hazard ratio; 95 % confidence interval: 0.93; 0.49, 1.79).Conclusion
In this cohort study of former university students, being overweight in youth did not confer protection against later dementia death.9.
Nicolas Degand Justine Dautremer Benoît Pilmis Agnès Ferroni Fanny Lanternier Julie Bruneau Olivier Hermine Stéphane Blanche Xavier Nassif Olivier Lortholary Marc Lecuit 《Journal of clinical immunology》2017,37(7):727-731
?
Helicobacter bilis is a commensal bacterium causing chronic hepatitis and colitis in mice. In humans, enterohepatic Helicobacter spp. are associated with chronic hepatobiliary diseases.Purpose
We aimed at understanding the microbial etiology in a patient with X-linked agammaglobulinemia presenting with suppurative cholangitis.Methods
16S rDNA PCR directly performed on a liver biopsy retrieved DNA of H. bilis.Results
Clinical outcome resulted in the normalization of clinical and biological parameters under antibiotic treatment by a combination of ceftriaxone, metronidazole, and doxycyclin followed by a 2-week treatment with moxifloxacin and a 2-month treatment with azithromycin.Conclusion
In conclusion, these data suggest a specific clinical and microbiological approach in patients with humoral deficiency in order to detect H. bilis hepatobiliary diseases.10.
Herma Lennaerts Marieke Groot Maxime Steppe Jenny T. van der Steen Marieke Van den Brand Dorian van Amelsvoort Kris Vissers Marten Munneke Bastiaan R. Bloem 《BMC palliative care》2017,16(1):61
Background
Parkinson’s disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and – if needed – the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD.Methods/design
We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5–15 patients with PD and their family caregiver will be followed prospectively for 8–12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver.Discussion
This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.11.
Ellen M. H. Selten Rinie Geenen Henk J. Schers Frank H. J. van den Hoogen Roelien G. van der Meulen-Dilling Willemijn H. van der Laan Marc W. Nijhof Cornelia H. M. van den Ende Johanna E. Vriezekolk 《International journal of behavioral medicine》2018,25(2):198-206
Purpose
Patients’ beliefs about treatment modalities for knee and hip osteoarthritis (OA) will underlie their treatment choices. Based on the Theory of Planned Behavior, it is hypothesized that patients’ beliefs, subjective norm, and perceived behavioral control guide their treatment choices. Also, symptom severity and one’s inherent tendency to approach or avoid situations are assumed to play a role. The objective of this study was to test whether these variables were associated with intended treatment choices in knee and hip OA.Methods
Patients with knee and hip OA were randomly selected from hospital patient records. They completed the Treatment beliefs in OsteoArthritis questionnaire to assess positive and negative treatment beliefs regarding five treatment modalities: physical activities, pain medication, physiotherapy, injections, and arthroplasty. Other measures were intention, subjective norm, perceived behavioral control (ASES), symptom severity (WOMAC), and the person’s general tendency to approach or avoid situations (RR/BIS scales). Three models were tested using path analyses to examine the hypothesized associations.Results
Participants were 289 patients. Positive treatment beliefs and subjective norm were consistently associated with intended treatment choice across all treatment modalities. Negative treatment beliefs were associated with intended treatment choices for pain medication and arthroplasty. Other associations were not significant.Conclusions
This is the first study testing the Theory of Planned Behavior in the context of treatment choices in OA. Findings suggest that foremost positive beliefs about treatment modalities and the norms of one’s social environment guide a specific treatment choice. Unexpectedly, symptom severity was not related to intended treatment choices.12.
Maria Lavinia Bartolucci Ida Marini Francesco Bortolotti Daniela Impellizzeri Rosanna Di Paola Giuseppe Bruschetta Rosalia Crupi Marco Portelli Angela Militi Giacomo Oteri Emanuela Esposito Salvatore Cuzzocrea 《Inflammation research》2018,67(10):891-901
Objective and design
Temporomandibular disorder (TMD) is a common painful condition in the temporomandibular joint (TMJ). Joint inflammation is believed to be a chief cause of pain in patients with TMD, through the release of pro-inflammatory cytokines that induce peripheral sensitization of nerve terminals followed by microglial stimulation.Materials and subject
TMJ was induced in rats with the injection of complete Freund’s adjuvant (CFA) emulsion into the left TMJ capsule.Treatment
The present study would assess the effects of micronized palmitoylethanolamide (m-PEA) on glial activation and trigeminal hypersensitivity.Methods
Ten mg/kg m-PEA or corresponding vehicle was administered 1 h after CFA and mechanical allodynia and edema were evaluated at 24 and 72 h after CFA injection.Results
CFA-injected animals showed TMJ edema and ipsilateral mechanical allodynia accompanied by a robust growth in GFAP protein-positive satellite glial cells and activation of resident macrophages in the TG. Moreover, m-PEA administration significantly reduced the degree of TMJ damage and pain, macrophage activation in TG and up-regulation of Iba1.Conclusions
The results confirm that m-PEA could represent a novel approach for monitoring pain during trigeminal nerve sensitization.13.
Background
Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.Methods/design
This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.Discussion
This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.Trial registration
ACTRN Trial Number: ACTRN1261100041095414.
15.
Background
An increasing number of patients receive palliative chemotherapy near the end of life. The aim of this study is to evaluate the aggressiveness of chemotherapy in Turkish individuals near the end of life.Methods
Patients diagnosed with solid tumors and died from 2010 to 2011 in the medical oncology department of Akdeniz University were included in the study. Data about the diagnosis, treatment details and imaging procedures were collected.Results
Three hundred and seventy-three people with stage IV solid tumors died from 2010 to 2011 in our clinic. Eighty-nine patients (23.9%) patients underwent chemotherapy in the last month of life while 39 patients (10.5%) received chemotherapy in the last 14 days. The probability of undergoing chemotherapy in the last month of life was influenced by: age, ‘newly diagnosed’ patients, and performance status. There was no significant association of chemotherapy in the last month of life with gender and tumor type. Having a PET-CT scan did not alter the chemotherapy decision.Conclusion
In conclusion, chemotherapy used in the last month of life in a tertiary care center of Turkey is high. Increasing quality of life should be a priority near the end of life and physicians should consider ceasing chemotherapy and direct the patient to early palliative care.16.
Jennifer Smith-Merry James Gillespie Stephen R Leeder 《Australia and New Zealand Health Policy》2007,4(1):19
Background
There are currently limited pathways into a career in health policy research in Australia, due in part to a serious absence of health policy research capability in Australian universities.Discussion
We define what we consider health policy research and education should comprise. We then examine what is currently on offer and propose ways to strengthen health policy research in Australia.Summary
This paper, which is part analysis and part commentary, is offered to provoke wider debate about how health policy research can be nurtured in Australia.17.
Introduction
Sepsis is a complex clinical condition that causes a high mortality rate worldwide. Numerous studies on the pathophysiology of sepsis have revealed an imbalance in the inflammatory network, thus leading to tissue damage, organ failure, and ultimately death. The impairment of neutrophil migration is associated with the outcome of sepsis.Methods
Literature review was performed on the roles of neutrophil recruitment and neutrophil receptors as pleiotropic regulators during sepsis. Additionally, we systematically classify neutrophil receptors with regard to the neutrophil response during sepsis and discuss the clinical implications of these receptors for the treatment of sepsis.Results
Increasing evidence suggests that there is significant dysfunction in neutrophil recruitment during sepsis, characterized by the failure to migrate to the site of infection. Neutrophil receptors, as pleiotropic regulators, play important roles in the neutrophil response during sepsis.Conclusions
Neutrophil receptors play key roles in chemotactic neutrophil migration and may prove to be suitable targets in future pharmacological therapies for sepsis.18.
Takehiro Takashima Miko Okamura Tzu-wen Yeh Tsubasa Okano Motoi Yamashita Keisuke Tanaka Akihiro Hoshino Noriko Mitsuiki Masatoshi Takagi Eiichi Ishii Kohsuke Imai Hirokazu Kanegane Tomohiro Morio 《Journal of clinical immunology》2017,37(5):486-495
Purpose
Primary immunodeficiency diseases (PIDDs) are rare inherited diseases that impair the human immune system. We established a multicolor flow cytometric assay to comprehensively evaluate the immune status and immunological characteristics of patients with PIDDs.Methods
Fifty-nine normal controls and 75 patients with PIDDs, including X-linked severe combined immunodeficiency (X-SCID), X-linked agammaglobulinemia (XLA), X-linked hyper IgM syndrome (X-HIGM), ataxia telangiectasia (AT), Wiskott-Aldrich syndrome (WAS), hyper IgE syndrome (HIES), and chronic mucocutaneous candidiasis disease (CMCD), were enrolled in this study. Immunophenotyes were evaluated by multicolor flow cytometry using seven different panels that allowed the detection of major leukocyte populations in peripheral blood.Results
Multicolor flow cytometry revealed distinct leukocyte populations and immunological features of patients with X-SCID, XLA, X-HIGM, AT, WAS, HIES, and CMCD.Conclusions
Immunophenotyping by multicolor flow cytometry is useful to evaluate immune status and contributes to the diagnosis and management of patients with PIDDs.19.
Keyu Jiang Chunxiao Che Zhangfan Ding Sa Zeng Weiping Wang Xiangyi He 《Surgical and radiologic anatomy : SRA》2016,38(9):1099-1104
Purpose
Based on a case of supernumerary cusp on the bucca of left maxillary second molar diagnosed by cone beam computed tomography (CBCT), its genesis, diagnosis and antidiastole are to be analysed. The clinic implication of CBCT is correspondingly discussed.Methods
The supernumerary cusp was diagnosed by oral general examination, intra-oral radiograph and CBCT. The features of supernumerary cusp, fused tooth, geminated tooth and concrescence tooth, especially differentiate points among them were discussed.Results
The case of supernumerary cusp on the bucca of left maxillary second molar was diagnosed definitely by the combined application of oral general examination, periapical radiograph and CBCT.Conclusion
Supernumerary cusp on the bucca of left maxillary second molar is a rare phenomenon, which is difficult to be differentiated from other tooth deformities. CBCT can improve accuracy of diagnosis.20.