A qualitative study of patients' experiences of living with hard-to-heal leg ulcers.

BACKGROUND: Patients with hard-to-heal leg ulcers are often older and have underlying conditions that contribute to making wound healing more difficult. Hard-to-heal leg ulcers are often treated in primary care and form a large part of the district nurse's work. AIM: To describe patients' experiences of living with hard-to-heal leg ulcers. METHODS: This qualitative study undertook 18 interviews with patients in primary care with hard-to-heal leg ulcers. FINDINGS: A total of three categories were identified: 'Living with changes in everyday life', 'Being dependent on care', and 'Experiencing and dealing with suffering'. The patients described limitations in physical activity and changes in social interaction. Suffering was described in different ways and also resulted in coping strategies. CONCLUSIONS: Living with hard-to-heal leg ulcers affects the patient's everyday life physically and mentally. Knowledge about the complexity of patients' experiences can contribute to better care and increased quality of life in a difficult situation.

Adverse Events Related to Accidental Unintentional Ingestions From Cough and Cold Medications in Children.

OBJECTIVES: Previous research has demonstrated that accidental unsupervised ingestions (AUIs) were responsible for the majority of cough and cold medication (CCM) ingestions leading to significant adverse events (AEs) in children. The objective of this analysis was to characterize the role of AUIs in the morbidity associated with CCM exposure in children. METHODS: This surveillance study collected data from 5 United States data sources from 2009 to 2016, in children younger than 6 years with an AE from an AUI involving at least 1 CCM over-the-counter pharmaceutical ingredient. An expert panel reviewed each case to determine causality. RESULTS: From 4756 total cases reviewed, 3134 (65.9%) had an AE from an AUI determined to be at least potentially related to a CCM ingredient. The majority (61.3%) of cases occurred in children aged 2 to younger than 4 years. Most exposures occurred in the child's own residence (94.9%), and 43.8% were admitted to a health care facility (22.0% to a critical care unit). Dextromethorphan and diphenhydramine, when packaged alone or in combination products, contributed to 96.0% of AUIs. The most common specific products involved were single-ingredient pediatric liquid diphenhydramine (30.1%) and single-ingredient pediatric liquid dextromethorphan (21.4%). There were 3 deaths from solid diphenhydramine formulations. CONCLUSIONS: There continues to be opportunities for the implementation of interventions to prevent AUIs of CCM in children. Additional emphasis on engineering controls, such as flow restrictors for liquid formulations targeting diphenhydramine and dextromethorphan products, represent additional opportunities to further reduce AEs from AUIs of CCM.

Women's experiences of living with lipedema.

Lipedema is a chronic, progressive disease that almost exclusively affects women and often misdiagnosed as obesity or primary lymphedema. Research concerning lipedema is sparse, and there is a lack of studies focusing on women's experiences of living with the illness. We interviewed fourteen women with lipedema with the aim of describing their experiences of living with lipedema. Our results show that women felt controlled by their body, and were fat-shamed and viewed by others as a person who lacked character. They received unsupportive advice on how to manage from healthcare, and blamed themselves while striving to take responsibility.

The use of ICD codes to identify IBD subtypes and phenotypes of the Montreal classification in the Swedish National Patient Register.

Introduction: Whether data on International Classification of Diseases (ICD)-codes from the Swedish National Patient Register (NPR) correctly correspond to subtypes of inflammatory bowel disease (IBD) and phenotypes of the Montreal classification scheme among patients with prevalent disease is unknown.Materials and methods: We obtained information on IBD subtypes and phenotypes from the medical records of 1403 patients with known IBD who underwent biological treatment at ten Swedish hospitals and retrieved information on their IBD-associated diagnostic codes from the NPR. We used previously described algorithms to define IBD subtypes and phenotypes. Finally, we compared these register-generated subtypes and phenotypes with the corresponding information from the medical records and calculated positive predictive values (PPV) with 95% confidence intervals.Results: Among patients with clinically confirmed disease and diagnostic listings of IBD in the NPR (N = 1401), the PPV was 97 (96-99)% for Crohn's disease, 98 (97-100)% for ulcerative colitis, and 8 (4-11)% for IBD-unclassified. The overall accuracy for age at diagnosis was 95% (when defined as A1, A2, or A3). Examining the validity of codes representing disease phenotype, the PPV was 36 (32-40)% for colonic Crohn's disease (L2), 61 (56-65)% for non-stricturing/non-penetrating Crohn's disease behaviour (B1) and 83 (78-87)% for perianal disease. Correspondingly, the PPV was 80 (71-89)% for proctitis (E1)/left-sided colitis (E2) in ulcerative colitis.Conclusions: Among people with known IBD, the NPR is a reliable source of data to classify most subtypes of prevalent IBD, even though misclassification commonly occurred in Crohn's disease location and behaviour and also among IBD-unclassified patients.

Anorectal Function After Ileo-Rectal Anastomosis Is Better than Pelvic Pouch in Selected Ulcerative Colitis Patients.

BACKGROUND: With a lifelong perspective, 12% of ulcerative colitis patients will need a colectomy. Further reconstruction via ileo-rectal anastomosis or pouch can be affected by patients' perspective of their quality of life after surgery. AIM: To assess the function and quality of life after restorative procedures with either ileo-rectal anastomosis or ileal pouch-anal anastomosis in relation to the inflammatory activity on endoscopy and in biopsies. METHOD: A total of 143 UC patients operated with subtotal colectomy and ileo-rectal anastomosis or pouches between 1992 and 2006 at Linköping University Hospital were invited to participate. Those who completed the validated questionnaires (Öresland score, SF-36, Short Health Scale) were offered an endoscopic evaluation including multiple biopsies. Associations between anorectal function and quality of life with type of restorative procedure and severity of endoscopic and histopathologic grading of inflammation were evaluated. RESULTS: Some 77 (53.9%) eligible patients completed questionnaires, of these 68 (88.3%) underwent endoscopic evaluation after a median follow-up of 12.5 (range 3.5-19.4) years after restorative procedure. Patients with ileo-rectal anastomosis reported better overall Öresland score: median = 3 (IQR 2-5) for ileo-rectal anastomosis (n = 38) and 10 (IQR 5-15) for pouch patients (n = 39) (p < 0.001). Anorectal function (Öresland score) and endoscopic findings (Baron-Ginsberg score) were positively correlated in pouch patients (tau: 0.28, p = 0.006). CONCLUSION: Patients operated with ileo-rectal anastomosis reported better continence compared to pouches. Minor differences were noted regarding the quality of life. Ileo-rectal anastomosis is a valid option for properly selected ulcerative colitis patients if strict postoperative endoscopic surveillance is carried out.

Quality of life of patients with hard-to-heal leg ulcers: a review of nursing documentation.

People with hard-to-heal leg ulcers experience reduced quality of life (QoL), including physical, mental and social aspects; this, in turn, negatively affects the wound healing process. QoL is often overlooked by health professionals treating those with hard-to-heal wounds, for whom the focus is instead on the wound itself and the healing process. This study aimed to investigate how the QoL of patients with hard-to-heal wounds is documented and followed up by nurses. The healthcare records of patients with hard-to-heal wounds were reviewed using an audit instrument. Data were collected retrospectively from 12 patient healthcare records. The nursing documentation included few notes related to patients' QoL. The nurses focused on issues such as nutrition, mobilisation and smoking, while the patients expressed concerns about anxiety/depressed mood, pain and sleeping difficulties. Only nine of the documented problems were approved according to the instrument. Most importantly, documentation of planned interventions and outcomes was missing. Documentation by nurses around the QoL of patients with hard-to-heal wounds is lacking, because of which QoL might be neglected and wound healing might not progress well.

Swedish Inflammatory Bowel Disease Register (SWIBREG) - a nationwide quality register.

Background: Inflammatory bowel disease (IBD) is a chronic, inflammatory relapsing disease with increasing incidence. IBD research and long-term follow-up of patients have, however, been hampered by lack of detailed data on disease phenotype, patient-reported outcome measures, Physician Global Assessment, disease activity, and hospital-administered drugs. Aim: To review the Swedish IBD quality register (SWIBREG). Methods: Review of SWIBREG including questionnaire data from users and patients. Results: SWIBREG was launched in 2005, and as of April 2019, contains 46,400 patients with IBD (Crohn's disease: n = 15,705, ulcerative colitis: n = 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): n = 9155). Of these IBD patients, 7778 had been diagnosed in childhood (16.8%). Earlier research has shown that combining SWIBREG and the Swedish National Patient Register (NPR) yields a positive predictive value of 100% (95%CI = 95-100%) for having a diagnosis of IBD. Moreover, out of all patients in the NPR with a diagnosis of IBD plus either IBD-related surgery or immunomodulatory/biological treatment during the past 18 months, SWIBREG covers 59.0%. SWIBREG records not only information on conventional therapies but also on biological treatment, surgery, smoking, disease activity, patient-reported outcome measures (PROMs), and patient-experienced measures (PREMs). Data are presented through a graphical decision support system. Conclusion: SWIBREG benefits patients with IBD, and offers an ideal opportunity for healthcare personnel and researchers to examine disease phenotype and activity, PROMs/PREMs, and hospital-administered drugs in patients with IBD.

Antibacterial 5α-Spirostane Saponins from the Fruit of Cordyline manners-suttoniae.

Antibacterial-activity-guided fractionation of a dichloromethane extract from the fruit of Cordyline manners-suttoniae and subsequent structure-activity investigations resulted in the identification of 10 new (1-10) and one known (11) 5α-spirostane saponin. The structures of the new compounds were established by 1D and 2D NMR analyses. The absolute configurations of the isolated compounds were determined by X-ray diffraction analysis or chemical derivatizations. The most active compound, suttonigenin F (6), inhibited the Gram-positive bacteria Staphylococcus aureus with MIC75 values that were comparable to those of the antibiotic chloramphenicol. Structure-activity relationships were also obtained from the assessment of antibacterial and cytotoxic activities of the isolated saponins.

Transthyretin Glu54Leu - an unknown mutation within the Swedish population associated with amyloid cardiomyopathy and a unique fibril type.

For the first time, we report of a Swedish family of five individuals with a TTR Glu54Leu (p. Glu74Leu) mutation in the transthyretin gene. This mutation has been previously described a few times in the literature, but no phenotypic or clinical description has been done before. The most common mutation in the Swedish population is TTRVal30Met and is mostly found in the Northern part of Sweden. Interestingly, the TTRGlu54Leu mutation was found in the same endemic area. The main phenotype of the TTR Glu54Leu patients is severe cardiomyopathy, which resulted in heart transplantation for the index person. As previously seen for ATTR amyloidosis patients with mainly cardiomyopathy, the amyloid fibrils consisted of a mixture of full-length and fragmented TTR species. However, western blot analyses detected a previously unrecognized band, indicating that these patients may have a third, so far unrecognized, fibril composition type that is distinct from the usual type A band pattern.

Assessing BPSD with the support of the NPI-NH: a discourse analysis of clinical reasoning.

ABSTRACTBackground:The ability of nursing staff to assess and evaluate behavioral and psychological symptoms of dementia (BPSD) to determine when intervention is needed is essential. In order to assist with the assessment process, the current use of the Neuropsychiatric Inventory Nursing Home version (NPI-NH) is internationally accepted. Even though the NPI-NH is thoroughly validated and has several advantages, there are also various challenges when implementing this system in practice. Thus, the aim of this study was to explore clinical reasoning employed by assistant nurses when utilizing the NPI-NH as a tool to assess frequency and severity of BPSD in individuals with advanced dementia. METHOD: Twenty structured assessment sessions in which assistant nurses used the NPI-NH were audio recorded and analyzed with a discourse analysis focusing on the activities in the communication. RESULTS: Four categories were identified to convey assistant nurses' clinical reasoning when assessing and evaluating BPSD using the NPI-NH: considering deteriorations in ability and awareness, incorporating individual and contextual factors, overcoming variations in behaviors and ambiguous formulations in the instrument, and sense-making interactions with colleagues. CONCLUSION: The NPI-NH served as a supportive frame and structure for the clinical reasoning performed during the assessment. The clinical reasoning employed by assistant nurses became a way to reach a consensual and broader understanding of the individual with dementia, with the support of NPI-NH as an important framework.

Being in togetherness: meanings of encounters within primary healtcare setting for patients living with long-term illness.

AIMS AND OBJECTIVES: The aim of this study was to elucidate meanings of encounters for patients with long-term illness within the primary healthcare setting. BACKGROUND: Good encounters can be crucial for patients in terms of how they view their quality of care. Therefore, it is important to understand meanings of interactions between patients and healthcare personnel. DESIGN: A phenomenological hermeneutic method was used to analyse the interviews. METHODS: Narrative interviews with ten patients with long-term illness were performed, with a focus on their encounters with healthcare personnel within the primary healthcare setting. A phenomenological hermeneutical approach was used to interpret the interview texts. RESULTS: The results demonstrated that patients felt well when they were seen as an important person and felt welcomed by healthcare personnel. Information and follow-ups regarding the need for care were essential. Continuity with the healthcare personnel was one way to establish a relationship, which contributed to patients' feelings of being seen and understood. Good encounters were important for patients' feelings of health and well-being. Being met with mistrust, ignorance and nonchalance had negative effects on patients' perceived health and well-being and led to feelings of lower confidence regarding the care received. CONCLUSIONS: Patients described a great need to be confirmed and met with respect by healthcare personnel, which contributed to their sense of togetherness. Having a sense of togetherness strengthened patient well-being. RELEVANCE TO CLINICAL PRACTICE: By listening and responding to patients' needs and engaging in meetings with patients in a respectful manner, healthcare personnel can empower patients' feelings of health and well-being. Healthcare personnel need to be aware of the significance of these actions because they can make patients experience feelings of togetherness, even if patients meet with different care personnel at each visit.

Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke.

AIMS AND OBJECTIVES: To elucidate the experience of fatigue across several long-term illnesses, focusing on the similarities and differences. BACKGROUND: Fatigue is common to many long-term illnesses, but it has been studied mainly within the context of a single illness; qualitative studies comparing the experience and its impact on daily life across different long-term illnesses are lacking. DESIGN: Qualitative design. METHODS: A secondary analysis was conducted of five original interview studies involving 95 persons with ankylosing spondylitis, fibromyalgia, multiple sclerosis or stroke. RESULTS: Similarities and differences concerning experiences of fatigue were found across the studied long-term illnesses. All patients expressed the perception of having an unfamiliar body. Fatigue was also commonly expressed as unpredictable, uncontrollable and invisible to others. Differences were related to a constant versus a varying condition, a sudden and an uncontrollable sleepiness, a mutual reinforcement with pain and increased stress sensitivity. A lack of energy and a need for sleep and rest were common experiences, as was the impact on social relationships. There were also similarities regarding how the patients managed their daily life. The search for practical solutions and attitude adjustment differed with the fatigue characteristics. All patients felt a lack of understanding and disbelief from others. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Fatigue is commonly expressed by patients with long-term illnesses. Variations in experience are related to the type of diagnosis. The disparity between experiences influences how patients managed and adjusted to the conditions of everyday life. The illness-specific characteristics of fatigue warrant increased clinical awareness and may allow professionals to offer adequate information and establish effective methods of managing the condition. The feeling of invisibility and difficulty describing the experience of fatigue in particular highlights this need.

District nurses' views on quality of primary healthcare encounters.

Good encounters are fundamental for good and professional nursing care, and can be described as treating patients with respect and protecting their integrity and autonomy. This study describes district nurses' views on quality of healthcare encounters in primary healthcare. A purposive sample of 27 district nurses participated in five focus group interviews. The focus groups interviews were digitally recorded and transcribed verbatim. The interview texts were analysed using a thematic content analysis. The analysis resulted in four themes, including being aware of the importance and difficulties during encounters, being the patient's advocate, being attentive to the unique person and being informed when a meeting turned out poorly. The results show that district nurses believed that encounters formed the basis of their work and it was vital for them to be aware of any difficulties. District nurses found that acting in a professional manner during encounters is the most significant factor, but this type of interaction was sometimes difficult because of stress and lack of time. The district nurses considered themselves to be the patients' advocate in the healthcare system; in addition, the acts of seeing, listening, believing and treating the patient seriously were important for providing good quality care. If a poor encounter occurred between the district nurse and the patient, the district nurses found that it was necessary to arrange a meeting to properly communicate what problems arose during the interaction. The district nurses highlighted that providing an apology and explanation could improve future encounters and establish a better nurse-patient relationship. In conclusion, this study shows the importance of confirming and respecting patients' dignity as the fundamental basis for a good quality encounter in primary healthcare.

Meanings of being received and met by others as experienced by women with fibromyalgia.

Fibromyalgia (FM) is a common chronic pain syndrome that mostly affects middle-aged women. Our aim with this study was to elucidate meanings of being received and met by others as experienced by women with FM. Interviews with a narrative approach were conducted with 9 women. We analyzed the transcribed interviews with a phenomenological hermeneutical interpretation. The findings revealed two themes: being seen as a malingerer and being acknowledged. Meanings of being received and met by others, as experienced by women with FM, can be understood as a movement between the two perspectives. When they were acknowledged, their feelings of security and trust increased, but the women could not rely on this because others received and met them in such an unpredictable manner.

Meanings of fatigue for women with Parkinson's disease.

The existing knowledge of women's experiences of living with Parkinson's disease and fatigue is limited. To gain first-hand knowledge, we interviewed 11 women using a phenomenological hermeneutic interpretation. The results indicate that the familiar daily routines of women with Parkinson's disease had changed in the sense that their bodily attachment to the world had been altered. The body no longer provided smooth access to the surrounding world; rather, the body served as a barrier to daily living. In practice, understanding this barrier can be significant in recognizing how to create positive conditions that support the women's experiences and how to formulate their care in congruence with their needs.

Meanings of feeling well for women with fibromyalgia.

The researchers' focus in this study was to elucidate meanings of feeling well for women with fibromyalgia (FM). We obtained narrative interviews with 13 women with FM and used a phenomenological-hermeneutic interpretation to analyze the interview texts. Our interpretation of the findings shows that for women with FM meanings of feeling well can be understood as having strength to be involved. The women's experiences of feeling well meant being in control, having power, finding one's own pace, and experiencing feelings of belonging.

'Do you feel well or unwell?' A study on children's experience of estimating their nausea using the digital tool PicPecc.

Research with childhood cancer has progressed greatly in recent years, resulting in much improved treatment that is more intensive. However, with this new treatment children often experience negative symptoms, and research shows that nausea is a symptom that most affects them. Pictorial support in person-centred care for children (PicPecc) is a digital picture-based tool for children who undergo treatment due to their cancer diagnosis and helps them more effectively communicate and self-report their symptoms and emotions. The aim of the study was to investigate children's experience of (i) using mHealth in nausea management and (ii) their acceptability of using an application (App). Semi-structured interviews were conducted with eight children aged five to fifteen years. Data were analysed with qualitative content analysis. The findings were presented in three categories: 1) Communicating feelings, 2) Playfulness generated in motivation and 3) App adaptable to children's capabilities. Using an App contributed to new opportunities for the children to participate in their care. They experienced their treatment in different ways and used different strategies to manage and distract themselves from their symptoms. Using the PicPecc App can increase healthcare staff's understanding of how children experience nausea when they undergo chemotherapy.

Rapid Diagnostic Tests for the Detection of the Four Dengue Virus Serotypes in Clinically Relevant Matrices.

The efficient and accurate diagnosis of dengue, a major mosquito-borne disease, is of primary importance for clinical care, surveillance, and outbreak control. The identification of specific dengue virus serotype 1 (DENV-1) to DENV-4 can help in understanding the transmission dynamics and spread of dengue disease. The four rapid low-resource serotype-specific dengue tests use a simple sample preparation reagent followed by reverse transcription-isothermal recombinase polymerase amplification (RT-RPA) combined with lateral flow detection (LFD) technology. Results are obtained directly from clinical sample matrices in 35 min, requiring only a heating block and pipettes for liquid handling. In addition, we demonstrate that the rapid sample preparation step inactivates DENV, improving laboratory safety. Human plasma and serum were spiked with DENV, and DENV was detected with analytical sensitivities of 333 to 22,500 median tissue culture infectious doses (TCID50)/mL. The analytical sensitivities in blood were 94,000 to 333,000 TCID50/mL. Analytical specificity testing confirmed that each test could detect multiple serotype-specific strains but did not respond to strains of other serotypes, closely related flaviviruses, or chikungunya virus. Clinical testing on 80 human serum samples demonstrated test specificities of between 94 and 100%, with a DENV-2 test sensitivity of 100%, detecting down to 0.004 PFU/µL, similar to the sensitivity of the PCR test; the other DENV tests detected down to 0.03 to 10.9 PFU/µL. Collectively, our data suggest that some of our rapid dengue serotyping tests provide a potential alternative to conventional labor-intensive RT-quantitative PCR (RT-qPCR) detection, which requires expensive thermal cycling instrumentation, technical expertise, and prolonged testing times. Our tests provide performance and speed without compromising specificity in human plasma and serum and could become promising tools for the detection of high DENV loads in resource-limited settings. IMPORTANCE The efficient and accurate diagnosis of dengue, a major mosquito-borne disease, is of primary importance for clinical care, surveillance, and outbreak control. This study describes the evaluation of four rapid low-resource serotype-specific dengue tests for the detection of specific DENV serotypes in clinical sample matrices. The tests use a simple sample preparation reagent followed by reverse transcription-isothermal recombinase polymerase amplification (RT-RPA) combined with lateral flow detection (LFD) technology. These tests have several advantages compared to RT-qPCR detection, such as a simple workflow, rapid sample processing and turnaround times (35 min from sample preparation to detection), minimal equipment needs, and improved laboratory safety through the inactivation of the virus during the sample preparation step. The low-resource formats of these rapid dengue serotyping tests have the potential to support effective dengue disease surveillance and enhance the diagnostic testing capacity in resource-limited countries with both endemic dengue and intense coronavirus disease 2019 (COVID-19) transmission.

A multicentric study of the disease risks and first manifestations in hereditary transthyretin amyloidosis (ATTRv): insights for an earlier diagnosis.

BACKGROUND: In hereditary transthyretin amyloidosis (ATTRv), early manifestation and age at onset (AO) may vary strikingly. We assessed the disease'risk (penetrance), AO and initial features in ATTRv families to gain insights on the early disease presentation. METHODS: Genealogical information, AO and first disease manifestations were collected in ATTRv families, from Sweden, Italy (Sicily), Spain (Mallorca), France, Turkey, Brazil. Penetrance was computed using a non-parametric survival method. RESULTS: We analysed 258 TTRV30M kindreds and 84 carrying six other variants (TTRT49A, F64L, S77Y, S77F, E89Q, I107V). In ATTRV30M families, the earliest disease risk was found at age 20 years in the Portuguese and Mallorcan families and at age 30-35 years, in the French and Swedish groups. The risks were higher in men and in carriers of maternal descent. In families carrying TTR-nonV30M variants, the earliest disease risk ranged from 30 y-o in TTRT49A to 55 y-o in TTRI107V families. Peripheral neuropathy symptoms were the most frequent initial manifestations. Among patients carrying TTRnonV30M variants, about 25% had an initial cardiac phenotype, one third a mixed phenotype. CONCLUSION: Our work provided solid data on the risks and early features of ATTRv in a spectrum of families to enhance an early diagnosis and treatment.

A hidden kind of suffering: female patient's complaints to Patient's Advisory Committee.

The aim of this study was to describe female patients' experiences of dissatisfaction with healthcare. People who have been treated with dignity during healthcare encounters are more prone to report better adherence to treatment and higher satisfaction with their care. Good quality care is commonly described as individualized and related to individual needs. This study has a qualitative approach, as the aim was to describe female patients' experiences of dissatisfaction with healthcare from a first person perspective. A purposive sample of fourteen women was interviewed about their experiences of dissatisfaction with healthcare. The interviews were subjected to a qualitative content analysis. The findings show that the women were treated with indifference when they were being withheld information, felt distrusted, and when they were treated badly they did not receive an apology. The findings also show that the women experienced that they did not feel safe when they had no one liable to turn to within the healthcare when the encounter did not correspond to the women's needs and expectations. The women's experiences of being withheld explanations can be seen as a violation of their dignity and a hidden suffering from care. In conclusion, the study shows the importance of receiving a personal explanation after filing a complaint about healthcare and recommends that clinics that receive a complaint from a patient should contact that patient and provide an individualized explanation.