| 1. |
- Ivarsson, Bodil, et al.
(författare)
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Change in health-related quality of life at early follow-up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension
- 2024
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Ingår i: Pulmonary Circulation. - 2045-8932. ; 14:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Ivarsson, Bodil, et al.
(författare)
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Novel Insight into How Nurses Working at PH Specialist Clinics in Sweden Perceive Their Work
- 2020
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Ingår i: Healthcare. - : MDPI AG. - 2227-9032. ; 8:2
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
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| 4. |
- Ivarsson, Bodil, et al.
(författare)
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The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective
- 2021
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Ingår i: Journal of Primary Care and Community Health. - : SAGE Publications. - 2150-1319 .- 2150-1327. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Johansson, Anders, et al.
(författare)
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General Practitioners’ Experiences of Digital Written Patient Dialogues : A Pilot Study Using a Mixed Method
- 2020
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Ingår i: Journal of Primary Care and Community Health. - : SAGE Publications. - 2150-1319 .- 2150-1327. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Johansson, Anders, et al.
(författare)
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Patients’ Experiences With a Digital Primary Health Care Concept Using Written Dialogues : A Pilot Study
- 2020
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Ingår i: Journal of Primary Care and Community Health. - : SAGE Publications. - 2150-1319 .- 2150-1327. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Johansson, David, et al.
(författare)
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Information Technology and Medical Technology Personnel's Perception Regarding Segmentation of Medical Devices : A Focus Group Study
- 2020
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Ingår i: Healthcare. - : MDPI AG. - 2227-9032. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Segmentation is one way of improving data protection. The aim of this study was to investigate Information Technology (IT) and Medical Technology (MT) personnel's perception in relation to ongoing segmentation of medical devices and IT infrastructure in the healthcare sector. Methods: Focus group interviews with 9 IT and 9 MT personnel in a county council in southern Sweden were conducted. The interviews focused on two areas: Positive expectations and misgivings. Digital recordings were transcribed verbatim and analyzed using qualitative content analysis. Results: Responses related to 2 main areas: Information security and implementation of segmentation. Informants stated that network segmentation would increase the overall level of cybersecurity for medical devices, addressing both insider and outsider threats. However, it would also increase the need for administration and the need for knowledge of the communication patterns of medical devices from the manufacturer's perspective. Conclusion: IT and MT personnel in a county council in southern Sweden believed that segmentation would increase cybersecurity but also increase administration and resource needs, which are important opinions to take into consideration. The present study can be used as a model for others to increase awareness of opinions of healthcare organizations.
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| 8. |
- Kheladze, Nino, et al.
(författare)
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Experiences of using a continuous glucose monitoring system in children—a descriptive study with parents in the republic of Georgia
- 2021
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Ingår i: Healthcare. - : MDPI AG. - 2227-9032. ; 9:11
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Kjellström, Barbro, et al.
(författare)
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Adherence to disease-specific drug treatment among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension
- 2020
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Ingår i: European Respiratory Journal Open Research. - Sheffield : European Respiratory Society (ERS). ; 6:4
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Kjellström, Barbro, et al.
(författare)
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Outpatient specialist clinics for pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension in the Nordic countries
- 2020
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Ingår i: Pulmonary Circulation. - : Wiley. - 2045-8932 .- 2045-8940. ; 10:4
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Tidskriftsartikel (refereegranskat)abstract
- Pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension are rare conditions that require complex interventions by multidisciplinary teams. The European Society of Cardiology (ESC)/the European Respiratory Society (ERS) 2015 guidelines included recommendations for pulmonary hypertension (PH) referral centers including minimum number of patients, staff, facilities, and network. The aim of the present study was to investigate how the PH-specialist centers in the Nordic countries are presently organized. A descriptive, questionnaire was sent to all PH-specialist centers in the Nordic countries in 2018. Sixteen of 20 PH-specialist centers completed the questionnaire. Seven centers (43%) followed less than 50 patients and three centers (19%) followed 125 patients or more. All had a physician or nurse attending or available at the clinic and eight had support staff such as physiotherapists, counsellors, dieticians, or psychologists directly connected to the center. Twelve centers were available by telephone five days or more per week. Nine centers offered a nurse-led outpatient clinic and of those, six had nurses delegated to make protocol-led changes in pulmonary arterial hypertension-specific treatment. Half of the centers had cooperation with a patient organization. All centers except one used international guidelines to guide care and treatment. More than half of the Nordic PH-specialist centers adhered to the ESC/ERS 2015 guidelines recommendations for volumes and staff in 2018, but there is potential for improvement. However, when formulating recommendations of patient volumes in guidelines, the situation for the geographical large but sparsely populated Nordic countries needs to be considered.
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