Change in health-related quality of life at early follow-up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.

Symptoms associated with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) impact patient's health-related quality of life (HRQoL). Studies on change and if a minimal clinically important difference (MCID) in HRQoL is reached within a year after diagnosis are lacking. The aim was to investigate the change in HRQoL as well as the proportion of patients that reached MCID at an early postdiagnosis visit. The study included adult patients from the Swedish PAH & CTEPH registry, diagnosed 2008-2021, with Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) at time of diagnosis and a follow-up. Data were analyzed as total population and dichotomized for sex, age (<65 vs. ≥65 years), time of diagnosis (≤2015 vs. >2015) and pulmonary hypertension (PH) subgroups. Data reported as median, interquartile range (IQR), and proportions (%). There were 151 patients (PAH = 119, CTEPH = 32) with an available CAMPHOR score at diagnosis and follow-up. CAMPHOR total sum was 31 (IQR: 21-43) and 25 (14-36); (p < 0.001) at diagnosis and follow-up, respectively. At follow-up, 56% had reached MCID in total sum, while for domains activity, symptoms, and QoL 27%, 33%, and 39% reached MCID, respectively. These results were independent of PH subgroup, diagnosis before or after 2015 and sex. Age below 65 years was related to improvements in activity and worsening of symptoms. In conclusion on a group level, improvements in CAMPHOR total sum as well as all domains were seen in the first year after diagnosis, however, only slightly more than half of the patients reached MCID for CAMPHOR total sum.

Societal costs associated to chronic thromboembolic pulmonary hypertension: A study utilizing linked national registries.

Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare but serious complication after a pulmonary embolism. Healthcare resource utilization (HCRU; hospitalization, outpatient visits, and drug utilization) as well as productivity loss (sick leave and disability pension) before and after the CTEPH diagnosis is sparsely studied. By linking several Swedish national databases, this study estimated the societal costs in a national CTEPH cohort (n = 369, diagnosed with CTEPH in 2008-2019) 5 years before and 5 years after diagnosis (index date) and compared to an age, sex, and geographically matched control group (n = 1845, 1:5 match). HCRU and productivity loss were estimated per patient per year. Patients were stratified as operated with pulmonary endarterectomy (PEA group) or not operated (non-PEA group). Direct and indirect societal costs were 2.1 times higher before, and 8.1 times higher after the index date for patients with CTEPH compared to the matched control groups. The higher costs were evident already several years preceding the index date. The main cost driver before the index date in both the PEA and the non-PEA groups was productivity loss. The productivity loss remained high for both groups in the 5-year period following the index date, but the main cost drivers were prescribed drugs and hospitalizations for patients that underwent PEA and prescribed drugs in the non-PEA group. In conclusion, CTEPH was associated with large societal costs related to healthcare consumption and productivity loss, both before and after diagnosis.

Ambulance nurses' experiences of pain management with Penthrox® in Swedish ambulance care: A mixed method study.

BACKGROUND: Methoxyflurane (MTX) is an inhalation agent that has several potential benefits for limiting various types of pain in ambulance care. AIM: To elucidate how ambulance nurses experience the characteristics of MTX in an ambulance care setting. METHOD: This cross-sectional study applied a mixed-methods approach, using a questionnaire together with complementary interviews. The questionnaire survey was analyzed using descriptive statistics (10-point Likert scale and question index values [Q-IV], range: 0-1.0). The interviews were analyzed using directed content analysis. Study results were reported following the STROBE statement. RESULTS: The ambulance nurses' overall general satisfaction with the MTX concept had a median of 7.0 (IQR 5-8), corresponding to a mean Q-IV of 0.84 (very good experience). The qualitative part was divided into three categories: sense of security, patient participation, and general usefulness. The results revealed varying experiences of usefulness, including pain-relieving effect and the possibility of patient participation. The perceived strong odor of MTX seemed to concern the ambulance nurses and their patients. CONCLUSION: In general, MTX was experienced as a safe and effective analgesic. However, the experiences of the overall usefulness varied, particularly since the product had a perceived strong odor. Increasing knowledge of using MTX, could likely increase the overall usefulness.

Societal costs associated with pulmonary arterial hypertension: A study utilizing linked national registries.

Pulmonary arterial hypertension (PAH) is a progressive disease with no cure. Healthcare resource utilization (HCRU; hospitalization, outpatient visits, and drug utilization) before diagnosis and productivity loss (sick leave and disability pension) before and after PAH diagnosis are not well known. By linking several Swedish national databases, this study have estimated the societal costs in a national PAH cohort (n = 749, diagnosed with PAH in 2008-2019) 5 years before and 5 years after diagnosis and compared to an age, sex, and geographically matched control group (n = 3745, 1:5 match). HCRU and productivity loss were estimated per patient per year. The PAH group had significantly higher HCRU and productivity loss compared to the control group starting already 3 and 5 years before diagnosis, respectively. HCRU peaked the year after diagnosis in the PAH group with hospitalizations (mean ± standard deviation; 2.0 ± 0.1 vs. 0.2 ± 0.0), outpatient visits (5.3 ± 0.3 vs. 0.9 ± 0.1), and days on sick leave (130 ± 10 vs. 13 ± 1) significantly higher compared to controls. Total costs during the entire 10-year period were six times higher for the PAH group than the control group. In the 5 years before diagnosis the higher costs were driven by productivity loss (76%) and hospitalizations (15%), while the 5 years after diagnosis the main cost drivers were drugs (63%), hospitalizations (16%), and productivity loss (16%). In conclusion, PAH was associated with large societal costs due to high HCRU and productivity loss, starting several years before diagnosis. The economic and clinical burden of PAH suggests that strategies for earlier diagnosis and more effective treatments are warranted.

Prevalence of potential drug-drug interactions with disease-specific treatments in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A registry study.

Polypharmacy increases the risk of drug-drug interactions that may disturb treatment effects. The aim of this study was to investigate the frequency of codispensing of potentially interacting or contraindicated drugs related to PH-specific treatment in the Swedish pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) population. All prescribed drugs, on an individual level, dispensed 2016-2017 at pharmacies to patients with PAH or CTEPH were obtained from The National Board of Health and Welfare's pharmaceutical registry. Potential drug-drug interactions were investigated using the Drug Interaction tool in the IBM Micromedex® database. There were 4785 different dispensed drugs from 572 patients (mean age 61 ± 16 years, 61% female, mean number of drugs per patient 8.4 ± 4.2) resulting in 1842 different drug combinations involving a PH-specific treatment. Of these drug combinations, 67 (3.5%) had a potential drug-drug interaction considered clinically relevant and it affected 232 patients (41%). The PH-specific drugs with the highest number of potential drug-drug interactions was bosentan (n = 23, affected patients = 171) while the most commonly codispensed, potentially interacting drug combination was sildenafil/furosemide (119 patients affected). Other common codispensed and potentially interacting drugs were anticoagulants (n = 11, affected patients = 100) and antibiotic treatment (n = 12, affected patients = 26). In conclusion, codispensing of PH-specific therapy and potentially interacting drugs was common, but codispensing of potentially contraindicated drugs was rare.

Experiences of patients with hip fractures after discharge from hospital.

BACKGROUND: To achieve successful rehabilitation after hip fracture and meet patient needs it is important to listen to how individual patients perceive their situation. PURPOSE: The aim of this study was to explore how patients with hip fractures experience the time after hospitalization. METHODS: A qualitative study was performed, data were analyzed using content analysis and included a total of 14 patients who had undergone surgery for a hip fracture. RESULTS: The result comprised two main themes, In the hands of others, and A new unfamiliar life. These included in total nine categories. CONCLUSIONS: Not all patients received adequate pain management or were treated in a professional way by the health system. Interventions targeting an improved care trajectory which include all care providers, the person with the hip fracture and their significant others are needed. Further research is needed to reveal the reasons for uneven/differing care.

Self-Perceived Competence of Ambulance Nurses in the Care of Patients with Mental Illness: A Questionnaire Survey.

Ambulance nurses in prehospital emergency care must assess, treat, and triage patients with mental health issues. This study aimed to investigate the self-perceived competence of ambulance nurses in prehospital emergency care of patients with mental illness. A cross-sectional questionnaire survey was done, a question-index value (Q-IV; range: 0-1.0) was defined as a summary of the proportion of positive responses (%). Correlations of self-perceived competence with education and professional experience were also examined. Overall self-perceived competence was good (mean Q-IV, 0.80). For six of the nine questions, women rated their abilities slightly lower than men. Women rated themselves as fairly good in providing "information about types of effective help available" (Q-IV, 0.55) and in "suggesting tactics for helping a person with mental illness feel better" (Q-IV, 0.56). Men rated their competence as fairly good in "directing patients to appropriate sources of help" (Q-IV, 0.58). Self-perceived competence did not correlate with education level or professional experience. In conclusion, these results indicate that in encounters with patients who have mental illness, ambulance nurses perceive their overall competencies as good, with some sex-based differences in self-perception for specific knowledge areas. Education level and professional experience did not correlate with self-perceived competence.

Respiratory rate modulation improves symptoms in patients with pulmonary hypertension.

BACKGROUND: Pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension are chronic diseases with a severe symptom burden. Common symptoms are dyspnoea at light activity and general fatigue that limits daily activities. Respiratory modulation by device-guided breathing decreased symptoms in patients with heart failure. The aim of this pilot study was to investigate if respiratory modulation could improve symptoms of dyspnoea in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension. METHOD: Adult patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension with symptoms of dyspnoea at rest or light activity performed home-based respiratory modulation by device-guided breathing 20 min a day for 3 months. Patients were on stable disease-specific treatment ⩾3 months and willing to undergo all study procedures. Dyspnoea score, World Health Organization class, physical status, N-terminal pro b-type natriuretic peptide, quality of life, respiratory rate and 6-min walk distance were assessed before and after 3 months with respiratory modulation. RESULTS: Nine patients with pulmonary arterial hypertension and five with chronic thromboembolic pulmonary hypertension completed the study protocol. Mean age was 71 ± 14 years, and 11 were women. After 3 months of respiratory modulation, dyspnoea score (-0.6, p = 0.014), respiratory rate at rest (-3 breaths/min, p = 0.013), World Health Organization class (-0.3, p = 0.040), quality of life (EuroQol Visual Analogue Scale +5 points, not significant) and decreased N-terminal pro b-type natriuretic peptide (-163 ng/L, p = 0.043) had improved. The fatigue and respiratory rate after the 6-min walk decreased while the 6-min walk distance remained unchanged. CONCLUSION: Patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension that used device-guided breathing for 3 months improved symptoms of dyspnoea and lowered the respiratory rate at rest and after exercise.

Experiences of Using a Continuous Glucose Monitoring System in Children-A Descriptive Study with Parents in the Republic of Georgia.

The benefits of medical devices are often multifaceted and may have an important impact on patients' and relatives' physical, mental and/or social well-being. Diabetes is a metabolic disorder and a continuous subcutaneous glucose monitoring sensor can suggest increasing treatment satisfaction. The purpose of this study was to describe parents' experiences during their daily lives and support needs when a child uses a Flash Glucose Monitoring system (FGM). Twenty parents (n = 3 men vs. n = 17 women) to children (age ranged between 22 months and 16 years) with diabetes disease type 1, treated with an FGM unit (used for an average of 7 months (range 1-72)) at home, participated in this study. A qualitative questionnaire survey with open questions including follow-up dialogues was distributed to the parents, and collected data were analysed using qualitative content analysis. Overall satisfaction with the Libre device was Md 10 (IQR 9.25-10). One main theme "Advances in technology significantly improved everyday life" emerged from 2 categories: Improvements in quality of life and Elements of challenges. In conclusion, this qualitative study determined that parents of children with DMT1 experience a great improvement in daily life when given the opportunity to use the Libre device.

The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective.

INTRODUCTION/OBJECTIVE: Diagnostic delays in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are related to increased morbidity and mortality. The risk of a delayed, or even a missed, diagnosis is high as the conditions are rare. The aim was to describe patients' and spouses' experiences of the journey from the first symptom to an established diagnosis. METHODS: A secondary analysis of 31 transcripts, based on 2 primary datasets containing interviews with 17 patients and 14 spouses, was carried out and analyzed according to qualitative content analysis. RESULTS: One overarching category was revealed from the content analysis; "The journey from doubt and hope to receive the diagnosis." Five subcategories were identified as: overall experiences; ignoring symptoms; seeking primary care/hospital specialty care; blame and stigma; and finding a pulmonary hypertension specialist clinic. The main finding was that both patients and spouses experienced that waiting for a diagnosis and the deteriorating state of health led to anxiety and frustration. The knowledge about rare diseases among health professionals needs to be improved to enable a timelier diagnosis and initiation of treatment. CONCLUSION: Patients' and spouses' lives were negatively affected by having to search for a correct diagnosis. In order for health care to identify rare diseases earlier, a well-functioning and responsive health care system, in primary care as well as in specialist care, is needed. Symptoms like breathlessness and fatigue are often unspecific but should not be ignored. Keeping the patient and spouse in the loop, and providing information that the search for an answer might take time is essential for health care providers to create trust.

Perceptions of ambulance nurses on their knowledge and competence when assessing psychiatric mental illness.

AIMS AND OBJECTIVES: To obtain the current perception of the knowledge and competence of pre-hospital emergency specialist nurses (ambulance) in attending patients with psychiatric symptoms. BACKGROUND: Psychiatric illnesses have increased throughout the population. Consequently, pre-hospital emergency services frequently attend individuals with suspected or known mental illnesses. DESIGN: We employed a set of quantitative and qualitative methods to gain a deeper understanding of ambulance nurses' self-evaluated knowledge. METHODS: Seven ambulance nurses received and completed a survey questionnaire prior commencing employment in November 2019. Then, we conducted interviews to explore ambulance nurses' perceptions of their own knowledge and competence when attending individuals with mental disorders. The surveys were analysed with descriptive statistics, followed by content analysis. RESULTS: Three topics emerged: the encounter of patients with mental illness; the awareness of lacking knowledge about mental illnesses; and the expectations for future Prehospital Emergency Psychiatric Response Teams. Although ambulance nurses already possessed basic knowledge regarding psychiatric illnesses, it was insufficient, based on their perception of appropriate care. Ambulance nurses considered that combining pre-hospital and psychiatric expertise in the pre-hospital emergency unit would increase their in-depth knowledge about various psychiatric illnesses, the treatment options and the alternatives regarding where to deliver patients for continued care.

A Prehospital Emergency Psychiatric Unit in an Ambulance Care Service from the Perspective of Prehospital Emergency Nurses: A Qualitative Study.

The prevalence of mental illness is steadily increasing, and ambulance teams frequently attend cases with suspected mental illness. A pilot project, Psychiatric Emergency Response Team (PAP), was carried out in which a prehospital emergency nurse (PEN) was accompanied by a psychiatric specialist nurse in the assessment of individuals with mental illness. The aim of the present study was to evaluate a prehospital emergency psychiatric unit from the perspective of PENs. A qualitative method using content analysis was applied. Seven senior PENs who had worked for 1 year in a prehospital psychiatric ambulance unit were interviewed individually. The analysis resulted in one main theme, "Transition from limited care and insufficient competence to improved and adequate care for psychiatric patients in ambulance care". This emerged from six subcategories: inter-professional development, access to patient records, theambulance vehicle,non-conveyed patients, cooperation with the police and meetings with patients and next of kin. In conclusion, these results suggest that in ambulance care in general, there is a lack of knowledge and skills about mental illnesses and initial care options. The PAP concept opened new avenues for the care of patients with mental illness, which the PENs described very positively as being helpful and valuable.

Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

BACKGROUND: Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) require lifelong treatment. The aim of the present study was to investigate adherence to disease-specific treatment in patients with PAH or CTEPH. METHODS: The study comprised an adult population diagnosed with PAH (n=384) or CTEPH (n=187) alive in 2016-2017. The study utilised three registries: the Swedish PAH registry, the National Board of Health and Welfare, and Statistics Sweden. Withdrawals from pharmacies of disease-specific oral treatments were studied. Adherence was assessed as: 1) Number of days covered defined as the difference between the total number of daily dosages dispensed and the total number of days covered; and 2) Manual assessment by two persons that independently reviewed each patient's prescription fill history to detect anomalies or patterns of deteriorating or improving adherence over time. RESULTS: The mean age was 61±16 years, 61% were female and mean time since diagnosis was 4.6 years. Adherence was 62% using the Number of days covered method and 66% by the Manual assessment method. Drug-specific adherence varied from 91% for riociguat to 60% for sildenafil. Good adherence was associated with shorter time since diagnosis in patients with PAH and with lower number of concomitant other chronic treatments in patients with CTEPH. Age, sex, socioeconomic status or number of pulmonary hypertension (PH) treatments were not associated with adherence. CONCLUSION: Adherence to oral disease-specific treatment was 60-66% and associated with time since diagnosis and number of concomitant chronic treatments. Sex, age or socioeconomic factors did not affect adherence.

Novel Insight into How Nurses Working at PH Specialist Clinics in Sweden Perceive Their Work.

Outpatient pulmonary hypertension (PH) specialist centers have an important role in the optimal management of pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). The aim of the present study was to gain an understanding of the work facing nurses at the outpatient PH specialist centers in Sweden. All nurses (n = 14) working at the outpatient PH specialist centers in Sweden were included. Qualitative content analysis was employed to analyze the interviews, wherein an overarching theme emerged: "Build and maintain a relationship with the patient". Three categories described the nurses' experiences: "Ambiguous satisfaction regarding information and communication", "Acting as a coordinator" and "Professional and personal development". To provide good patient care, the nurses described the key components as the ability to give information on all aspects of the disease and their availability by phone for patients, their relatives, and other healthcare resources. This requires evidence-based, specialist knowledge about the disease, its care, and treatments as well as experience. In conclusion, working as a nurse at the outpatient PH specialist centers highlight the advantages, expectations, and difficulties in working with patients with a rare and life-threatening illness. The overall knowledge and skills were high, but the nurses expressed a need for in-depth and continued training.

LTOT Patients' Experience of a Portable Oxygen Unit and Health-Related Quality of Life-A Cross-Sectional Study.

Background: The purpose of the present study was to elucidate the experiences of long-term oxygen therapy (LTOT) patients with a portable oxygen unit and to describe the patients' self-assessed health-related quality of life (HRQoL). Methods: The study employed a prospective cross-sectional design. Data collection entailed two questionnaires, namely the MedTech20 (patients' experience of the medical device in four areas) and EQ-5D (HRQoL). The informants consisted of patients (n = 148) treated with such a medical device and that were registered in Skåne University Hospital's database, Medusa. Results: In the domain Sense of security the informant felt the equipment reliable and safe to use and expressed a sense of control for the user. Regarding Social participation, the responses did not indicate the device to facilitate leisure activities, movement outside the homes, traveling or everyday tasks to a larger extent. The respondents did express a reduced sense of compromised integrity, with a minor effect on Intimacy. With regards to Convenience, the responses indicated the product to provide Adaptability to personal needs. Overall, a strongly affected HRQoL (Your current health condition, EQ-VAS Md = 50 (IQR 36-70)) with strong correlation with EQ-5D was seen. Conclusions: Informants experienced the portable oxygen unit as reliable and safe to use while giving a sense of control over the disease itself. A minor impact on social participation was reported, except for a reduced sense of compromised integrity. The patients also reported a strongly reduced HRQoL.

The Experience of Using Video Support in Ambulance Care: An Interview Study with Physicians in the Role of Regional Medical Support.

Background: In order to facilitate more effective patient assessment and diagnostic support by improving the flow of information between ambulance nurses (AN) and physicians in the role of regional medical support (RMS), an application was developed for transmitting real-time video images. Objective: The objective of this study was to elucidate the physicians' experiences using a video application to support the assessment and triage procedure in ambulance care, when patients are deemed to not have an urgent need for emergency care. Design: The design for this research was a qualitative interview study. Ten physicians, working as RMS in ambulance care, were purposively selected to participate. The telemedicine concept studied consisted of a real-time video image application, in addition to the currently used mobile phone. When a patient was deemed eligible for inclusion in the study, the ambulance nurse (AN) contacted the RMS via telephone to initiate a video consultation. To elucidate the RMS experience of using the application, a conventional content analysis was performed. Results: The main theme "a feeling of being satisfied through a sense of increased patient safety" emerged from the following two categories: adds value in diagnosing situations (three subcategories, i.e., support in diagnosing, usability, and technical weakness) and increase communication opportunities (four subcategories, i.e., assessing the level of care, patient dialogue, professional communication, and team learning). Conclusions: Physicians in the role of RMS experienced a positive impact using video image transmission in addition to the currently used mobile phone. This evaluation was derived from a sense of increased patient safety in the assessment situation when patients were considered to be triaged to self-care.

General Practitioners' Experiences of Digital Written Patient Dialogues: A Pilot Study Using a Mixed Method.

Background: The path between patients and health care providers has adopted new advanced information technologies. However, opinions vary about the digital care meeting. Physicians have expressed concerns about increased workload, changes in working methods, and information security. Purpose: To explore physicians' experiences and satisfaction of digital primary health care. Method: A convergent mixed method was used. First, participants completed a quantitative questionnaire survey with fixed response options described as index values (IV, 0-1.0), supplemented with a 10-point Likert-type scale, estimating satisfaction. Second, a qualitative interview used critical incident technique (CIT) to offer more complete context. Data were collected during 2 months in 2019; 6 general practitioners (GPs) participated. Results: The GPs described good experiences of the concept (IV 0.65), corresponding to a median satisfaction value of 6.5 (interquartile range 5-9,). CIT emerged into 2 main areas; "Hovering between traditional and digital primary health care" and "Using active strategies to handle the digital care system." GPs experienced that the concept offered a good flow, an asynchronous working approach was used. GPs also stated present chat design was a good complement to traditional forms of primary health care, and the benefits of being able to read patients' self-described history were considered a significant patient safety factor. However, the GPs felt that a predetermined symptom list were not suitable for all patients. Conclusion: Study results suggest the present design using digital written patient dialogues complements traditional primary healthcare. GPs described satisfaction and expressed good experiences of the concept, although further development of the design is needed.

Patients' Experiences With a Digital Primary Health Care Concept Using Written Dialogues: A Pilot Study.

Background: The changing health care environment promotes the adoption of new information technologies to connect patients and health care providers. However, individuals greatly vary in their ability to use new digital systems, and in their feelings regarding integrity and validation. Caregivers in southern Sweden plan to implement a new digital primary health care (DPHC) service, and patients' experiences must be studied to guide the best possible implementation of this service. Purpose: To examine the patients' experiences with DPHC using written dialogues. Method: Patients were consecutively recruited from June 2018 to April 2019. This prospective pilot study used questionnaires with fixed response options, summarized as index values (IV, 0-1.0) in the following domains: communication, technical functionality, and general experience of DPHC. Results: Participants included 286 patients with a mean age of 40 ± 15 years. The response rate was 49% (n = 140), including 40 men (29%) and 100 women (71%). Communication using DPHC was experienced as fairly good (IV, 0.58), technical functionality was experienced as good (IV, 0.80), and the general experience of DPHC was positive with an IV of 0.76. The overall experience of the concept (IV, 0.71), corresponds to a median satisfaction value of 8.0 (interquartile range, 6-9). The patients felt well-prepared and experienced reasonable time aspects. Of the responding patients, 81% would recommend DPHC to others, and a notable reason for satisfaction was availability. However, patients expressed some uncertainty regarding the physician's ability to assess correct care needs. Conclusion: The patients in our pilot study described their satisfaction and expressed good experiences with the concept of DPHC using written dialogues.