| 1. |
- Ragnarsson, Oskar, 1971, et al.
(författare)
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Overall and Disease-Specific Mortality in Patients With Cushing Disease: A Swedish Nationwide Study
- 2019
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Ingår i: Journal of Clinical Endocrinology and Metabolism. - : ENDOCRINE SOC. - 0021-972X .- 1945-7197. ; 104:6, s. 2375-2384
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Tidskriftsartikel (refereegranskat)abstract
- Context: Whether patients with Cushing disease (CD) in remission have increased mortality is still debatable. Objective: To study overall and disease-specific mortality and predictive factors in an unselected nationwide cohort of patients with CD. Design, Patients, and Methods: A retrospective study of patients diagnosed with CD, identified in the Swedish National Patient Registry between 1987 and 2013. Medical records were systematically reviewed to verify the diagnosis. Standardized mortality ratios (SMRs) with 95% CIs were calculated and Cox regression models were used to identify predictors of mortality. Results: Of 502 identified patients with CD (n = 387 women; 77%), 419 (83%) were confirmed to be in remission. Mean age at diagnosis was 43 (SD, 16) years and median follow-up was 13 (interquartile range, 6 to 23) years. The observed number of deaths was 133 vs 54 expected, resulting in an overall SMR of 2.5 (95% CI, 2.1 to 2.9). The commonest cause of death was cardiovascular diseases (SMR, 3.3; 95% CI, 2.6 to 4.3). Excess mortality was also found associated with infections and suicide. For patients in remission, the SMR was 1.9 (95% CI, 1.5 to 2.3); bilateral adrenalectomy and glucocorticoid replacement therapy were independently associated with increased mortality, whereas GH replacement was associated with improved outcome. Conclusion: Findings from this large nationwide study indicate that patients with CD have excess mortality. The findings illustrate the importance of achieving remission and continued active surveillance, along with adequate hormone replacement and evaluation of cardiovascular risk and mental health.
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| 2. |
- Ragnarsson, Oskar, 1971, et al.
(författare)
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The incidence of Cushing’s disease : a nationwide Swedish study
- 2019
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Ingår i: Pituitary. - : Springer. - 1386-341X .- 1573-7403. ; 22:2, s. 179-186
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Tidskriftsartikel (refereegranskat)abstract
- Background: Studies on the incidence of Cushing’s disease (CD) are few and usually limited by a small number of patients. The aim of this study was to assess the annual incidence in a nationwide cohort of patients with presumed CD in Sweden.Methods: Patients registered with a diagnostic code for Cushing’s syndrome (CS) or CD, between 1987 and 2013 were identified in the Swedish National Patient Registry. The CD diagnosis was validated by reviewing clinical, biochemical, imaging, and histopathological data.Results: Of 1317 patients identified, 534 (41%) had confirmed CD. One-hundred-and-fifty-six (12%) patients had other forms of CS, 41 (3%) had probable but unconfirmed CD, and 334 (25%) had diagnoses unrelated to CS. The mean (95% confidence interval) annual incidence between 1987 and 2013 of confirmed CD was 1.6 (1.4–1.8) cases per million. 1987–1995, 1996–2004, and 2005–2013, the mean annual incidence was 1.5 (1.1–1.8), 1.4 (1.0–1.7) and 2.0 (1.7–2.3) cases per million, respectively. During the last time period the incidence was higher than during the first and second time periods (P < 0.05).Conclusion: The incidence of CD in Sweden (1.6 cases per million) is in agreement with most previous reports. A higher incidence between 2005 and 2013 compared to 1987–2004 was noticed. Whether this reflects a truly increased incidence of the disease, or simply an increased awareness, earlier recognition, and earlier diagnosis can, however, not be answered. This study also illustrates the importance of validation of the diagnosis of CD in epidemiological research.
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| 3. |
- Sundström, Johan, Professor, 1971-, et al.
(författare)
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Risk factors for subarachnoid haemorrhage : a nationwide cohort of 950 000 adults
- 2019
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Ingår i: International Journal of Epidemiology. - : Oxford University Press. - 0300-5771 .- 1464-3685. ; 48:6, s. 2018-2025
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Subarachnoid haemorrhage (SAH) is a devastating disease, with high mortality rate and substantial disability among survivors. Its causes are poorly understood. We aimed to investigate risk factors for SAH using a novel nationwide cohort consortium.METHODS: We obtained individual participant data of 949 683 persons (330 334 women) between 25 and 90 years old, with no history of SAH at baseline, from 21 population-based cohorts. Outcomes were obtained from the Swedish Patient and Causes of Death Registries.RESULTS: During 13 704 959 person-years of follow-up, 2659 cases of first-ever fatal or non-fatal SAH occurred, with an age-standardized incidence rate of 9.0 [95% confidence interval (CI) (7.4-10.6)/100 000 person-years] in men and 13.8 [(11.4-16.2)/100 000 person-years] in women. The incidence rate increased exponentially with higher age. In multivariable-adjusted Poisson models, marked sex interactions for current smoking and body mass index (BMI) were observed. Current smoking conferred a rate ratio (RR) of 2.24 (95% CI 1.95-2.57) in women and 1.62 (1.47-1.79) in men. One standard deviation higher BMI was associated with an RR of 0.86 (0.81-0.92) in women and 1.02 (0.96-1.08) in men. Higher blood pressure and lower education level were also associated with higher risk of SAH.CONCLUSIONS: The risk of SAH is 45% higher in women than in men, with substantial sex differences in risk factor strengths. In particular, a markedly stronger adverse effect of smoking in women may motivate targeted public health initiatives.
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| 4. |
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| 5. |
- Charalambous, Andreas, et al.
(författare)
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A scoping review of trials of interventions led or delivered by cancer nurses
- 2018
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Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 86, s. 36-43
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Advances in research and technology coupled with an increased cancer incidence and prevalence have resulted in significant expansion of cancer nurse role, in order to meet the growing demands and expectations of people affected by cancer (PABC). Cancer nurses are also tasked with delivering an increasing number of complex interventions as a result of ongoing clinical trials in cancer research. However much of this innovation is undocumented, and we have little insight about the nature of novel interventions currently being designed or delivered by cancer nurses.OBJECTIVES: To identify and synthesise the available evidence from clinical trials on interventions delivered or facilitated by cancer nurses.DATA SOURCES AND REVIEW METHODS: A systematic review of randomised controlled trials (RCT), quasi-RCTs and controlled before and after studies (CBA) of cancer nursing interventions aimed at improving the experience and outcomes of PABC. Ten electronic databases (CENTRAL, MEDLINE, AMED, CINAHL, EMBASE, Epistemonikos, CDSR, DARE, HTA, WHO ICTRP) were searched between 01 January 2000 and 31 May 2016. No language restrictions were applied. Bibliographies of selected studies and relevant Cochrane reviews were also hand-searched. Interventions delivered by cancer nurses were classified according to the OMAHA System. Heat maps were used to highlight the volume of evidence available for different cancer groups, intervention types and stage of cancer care continuum.RESULTS: The search identified 22,450 records; we screened 16,169 abstracts and considered 925 full papers, of which 214 studies (247,550 participants) were included in the evidence synthesis. The majority of studies were conducted in Europe (n = 79) and USA (n = 74). Interventions were delivered across the cancer continuum from prevention and risk reduction to survivorship, with the majority of interventions delivered during the treatment phase (n = 137). Most studies (131/214) had a teaching, guidance or counselling component. Cancer nurse interventions were targeted at primarily breast, prostate or multiple cancers. No studies were conducted in brain, sarcoma or other rare cancer types. The majority of the studies (n = 153) were nurse-led and delivered by specialist cancer nurses (n = 74) or advanced cancer nurses (n = 29), although the quality of reporting was poor.CONCLUSIONS: To the best of our knowledge, this is the first review to synthesise evidence from intervention studies across the entire cancer spectrum. As such, this work provides new insights into the nature of the contribution that cancer nurses have made to evidence-based innovations, as well as highlighting areas in which cancer nursing trials can be developed in the future.
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| 6. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom dimensions as outcomes in interventions for patients with cancer : A systematic review
- 2018
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Ingår i: Oncology Nursing Forum. - : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 45:2, s. 237-249
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Tidskriftsartikel (refereegranskat)abstract
- PROBLEM IDENTIFICATION: Symptom experience in patients with cancer consists of several dimensions, often measured descriptively within various populations but seldom used as intervention outcomes. This review aims at describing symptom dimensions as outcomes of interventions designed to alleviate symptoms in patients with cancer and to describe these interventions' effects on at least two symptom dimensions. LITERATURE SEARCH: The PRISMA statement for reporting systematic reviews was used. Searches were undertaken in various indexing sites. DATA EVALUATION: Extracted data included design, participants, intervention and control group treatment, targeted symptom dimension, and summary of results. SYNTHESIS: 2,041 articles were identified and 15 were included. The symptom dimensions were intensity, distress, prevalence, frequency, consequences, and quality. Eleven interventions had significant effect on symptom dimensions, mostly on intensity and distress. IMPLICATIONS FOR PRACTICE: Oncology nurses need clinical skills to be able to understand patients' experiences through their narratives. Various interventions are targeted at symptoms, and these need to be implemented to provide evidence-based symptom management.
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| 7. |
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| 8. |
- Kling, Elisabeth, et al.
(författare)
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Säker och bättre vård vid livets slut : Erfarenheter av Liverpool Care Pathway i Arvika kommun
- 2016
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Konferensbidrag (refereegranskat)abstract
- Säker och bättre vård vid livets slut – Erfarenheter av Liverpool Care Pathway i Arvika kommunBakgrund: Liverpool Care Pathway (LCP) är en standardvårdplan som syftar till att säkerställa en god vård vid livets slutskede oavsett vårdform. Genom bedömning av centrala behov och symtom, tydliga mål, samt utvärdering av given vård innebär LCP en struktur för att kvalitetssäkra vården. I en strävan efter en god vård i livets slut för alla har användningen av LCP blivit alltmer utbredd, men trots detta är den utvärderad i begränsad omfattning. Mot denna bakgrund, samt att LCP under de senaste åren ifrågasatts är det angeläget att studera effekter av LCP på kvaliteten av vården i livets slutskede. Syfte: var att undersöka hur sjuksköterskor och omvårdnadspersonal i kommunal vård uppfattade att vården i livets slutskede påverkades efter införandet av LCP, samt vilken betydelse de anser att LCP fått för vården i livets slutskede. Metod: Deskriptiv tvärsnittsstudie med kvantitativ ansats. Data samlades in mellan januari och juni 2014 med en studiespecifik enkät (50 frågor) med utgångspunkt i LCP. Tjugotvå sjuksköterskor och 120 omvårdnadspersonal (svarsfrekvens 63 %) verksamma på en korttidsavdelning, fem särskilda boende och inom fyra hemtjänstgrupper deltog. Icke parametrisk statistik användes för att testa skillnader inom- och mellan grupper. Resultat: Både sjuksköterskor och omvårdnadspersonal ansåg att implementering av LCP inneburit att vårdens kvalitet i livet slut förbättrats. Omvårdnadspersonalen uppfattade att införandet av LCP innebar att patienterna erhöll bästa möjliga omvårdnad och medicinska vård i högre grad än sjuksköterskorna (p=.011). Att arbeta enligt LCP när patienten var döende innebar en vård som uppfattades både säker och av hög kvalitet av båda personalkategorierna. Vidare uppfattades LCP underlätta bedömning av patienternas symtom och behov, samt underlätta kommunikation och överföring av information mellan olika personalkategorier. Slutsats: Att vårda patienter i livets slut i kommunal vård innebär en stor utmaning för både omvårdnadspersonal och sjuksköterskor. Genom att strukturera och systematisera vården vid livets slut med LCP säkerställs bedömning av patienters symtom och behov, bemötande av patienter och närstående samt kommunikation inom teamet. Parametrar som är betydelsefulla för en säker och god vård.
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| 15. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Affected sexuality, body image and health related quality of life in patients treated for hematologic malignancies - a one year follow-up
- 2015
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Ingår i: European Journal of Cancer. - : Elsevier. - 0959-8049 .- 1879-0852. ; 51, s. S252-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Longitudinal studies examining sexuality, body image and health-related quality of life (HRQoL) in middle-aged and elderly patients treated with chemotherapy or chemoimmunotherapy for hematologic malignancies are lacking. The aim of this study was to describe and explore changes in sexuality, body image and HRQoL in patients treatedfor hematologic malignancies, from baseline until twelve months after treatment.Material and Methods: Patients above 45 years treated for Diffuse large B-cell Lymphoma (DLBCL), Chronic Lymphocytic Leukemia (CLL) or Acute Myeloid Leukemia (AML). Data were collected at baseline (n = 32), one (n = 25), six (n = 20) and 12 months (n = 19) after treatment by means of three instruments: The Sexual Adjustment Questionnaire (SAQ), TheBody Image Scale (BIS) and The European Organization for Research and Treatment of Cancer Quality of Life questionnaires (EORTC QLQ-C30, version 3). Descriptive- and non-parametric statistics were used.Results: One month after treatment scores were lowered regarding sexual interest (P = 0.005), sexual function (P = 0.031), sexual satisfaction (P = 0.016, P = 0.004) and sexual relationship. After six months the patient reported scores had returned almost entirely to baseline scores, except for sexual relationship. At 12 months, sexual relationship was still negatively affected. Body image was reported to be affected in a low extent duringthe study period. After six and 12 months, body image was reported to not be affected at all by 50% and 53%, respectively. However, women reported body-image to be more affected than men at one (P = 0.01) and 12 months (p = 0.021). Regarding HRQoL, patients reported gradually statistically significant improved scores during the study period.Conclusion: In this study, sexuality, body image and HRQoL became negatively affected in patients with hematologic malignancies 45 years and older during treatment. Improvements were gradually seen after treatment, but the scores regarding sexual relationship were still affected after one year. Although sexual interest was reported to be low this finding highlights the need of support to these patients regarding sexuality during follow-up care. Furthermore, body image was more affected in women than in men indicating that interventions should be adjusted for sex. This was a small study and future studies with larger sample are needed.
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| 17. |
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| 18. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Changes in Sexuality, Body Image and Health Related Quality of Life in Patients Treated for Hematologic Malignancies : A Longitudinal Study
- 2016
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Ingår i: Sexuality and disability. - New York : Springer. - 0146-1044 .- 1573-6717. ; 34:4, s. 367-388
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Tidskriftsartikel (refereegranskat)abstract
- Longitudinal studies exploring sexuality, body image and health-related quality of life (HRQoL) are lacking in patients treated with chemo- or chemoimmuno-therapy for hematologic malignancies. The aim was to describe and explore changes in sexuality, body image and HRQoL in patients treated for hematologic malignancies, from baseline until 6 months after treatment. Twenty patients above 45 years (median age 62) treated for DLBCL, CLL or AML participated. Data were collected at baseline, 1- and 6-months after treatment by means of three instruments: SAQ-S, BIS and EORTC QLQ-C30. The results showed that patients' sexuality was negatively affected 1 month after treatment, but after 6 months the patient reported scores had returned almost entirely to baseline scores. Body image was slight negatively affected after 1 month and after 6 months, 50 % reported that body image was not affected at all. Regarding HRQoL, patients reported gradually improved scores during the study period. Regression analysis showed that changes in sexuality and body image seemed to influence changes in HRQoL. This study has shown changes in sexuality, body image and HRQoL over time in patients above age 45 treated for hematologic malignancies. One month after treatment all three areas becomes negatively affected, and thereafter the patients' scores recovered to a great extent regarding these issues within 6 months. Sexuality and body image seem to be important aspects of HRQoL for these patients and need to be integrated in the cancer rehabilitation during and after treatment.
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| 19. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Health care professionals’ perceptions of palliative care quality in a combined acute oncology-palliative care unit -improvements are needed regarding information, participation, continuity and existential needs.
- 2019
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Konferensbidrag (refereegranskat)abstract
- Background: The number of persons with life-threatening illnesses who need palliative care is expected to increase as people are living longer, due to advances in medical treatment and technology. Access to palliative care with inherent required competencies varies greatly leading to unequal availability and quality of end of life care. There are major shortcomings in palliative care and regional differences in accessibility, quality, symptom relief, involvement and support for close relatives. Evaluation of quality of care is important to guide improvements and the use of healthcare professionals’ (HCP) perspective means that fragile patients and their close relatives are not hampered.Aim: was to investigate how HCPs in palliative care perceive quality of care regarding perceived reality (PI) (given care) and subjective importance (SI) (how care should be). Method: Cross-sectional study with descriptive and analytical design. Data were collected February 2018 with the four dimensional questionnaire Quality from the Patient’s Perspective specific for Palliative Care - personnel (QPP-PC) among HCP in a combined acute oncology-palliative care unit (total survey) at a county council in Sweden. Response rate of 53 % (n=41). Wilcoxon´s signed rank test was used for comparing the perceived reality and subjective importance. Results: HCP scored statistically significant higher regarding subjective importance compared to perceived reality (p≤ .00) in all four dimension; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere. Information (PR mean 2.78 SD .57; SI mean 3.66 SD .34; p≤ .00), participation (PR mean 2.84 SD .70; SI mean 3.52 SD .54; p≤ .00), continuity (PR mean 2,61 SD .74; SI mean 3,34 SD .59; p≤ .00), and spiritual/existential needs (PR mean 2.73, SD .64; SI mean 3,34, SD .87; p≤ .00) were factors where respondents scored lowest values in PR compared to SI. Cronbach´s α-values in dimensions and factors were moderate to high. Conclusion: These findings highlight palliative QoC problems in units with mixed care focus, i.e. acute, supportive and end of life care. Strategies to ensure PC when needed has to be developed and implemented in acute care settings to avoid futile interventions.
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| 20. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Health Care Professionals' Perceptions of Palliative Care Quality in a Combined Acute Oncology-palliative Care Unit - Improvements Are Needed Regarding Information, Participation, Continuity and Existential Needs.
- 2019
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The number of persons with life-threatening illnesses who need palliative care is expected to increase as people are living longer, due to advances in medical treatment and technology. Access to palliative care with inherent required competencies varies greatly leading to unequal availability and quality of end of life care. There are major shortcomings in palliative care and regional differences in accessibility, quality, symptom relief, involvement and support for close relatives. Evaluation of quality of care (QoC) is important to guide improvements and the use of healthcare professionals’ (HCP) perspective means that fragile patients and their close relatives are not burdened.Aim: To investigate how HCPs in palliative care perceive quality of care regarding perceived reality (PI) (given care) and subjective importance (SI) (how care should be). Method: Cross-sectional study with descriptive and analytical design. Data were collected February 2018 with the four dimensional questionnaire Quality from the Patient’s Perspective specific for Palliative Care - personnel (QPP-PC) among HCP in a combined acute oncology-palliative care unit (total survey) in Sweden. Response rate of 53 % (n=41). Results: HCP scored statistically significant higher regarding subjective importance compared to perceived reality (p≤ .00) in all four dimension; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere. Information (PR mean 2.78 SD .57; SI mean 3.66 SD .34; p≤ .00), participation (PR mean 2.84 SD .70; SI mean 3.52 SD .54; p≤ .00), continuity (PR mean 2,61 SD .74; SI mean 3,34 SD .59; p≤ .00), and spiritual/existential needs (PR mean 2.73, SD .64; SI mean 3,34, SD .87; p≤ .00) were factors where respondents scored lowest values in PR compared to SI. Cronbach´s α-values in dimensions and factors were moderate to high. Conclusion: These findings highlight palliative QoC problems in units with mixed care focus, i.e. acute, supportive and end of life care. Strategies to ensure PC when needed has to be developed and implemented in acute care settings to avoid futile interventions.
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| 21. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Impact of the Liverpool Care Pathway on quality end of life care inresidential care homes and home care – nurses’ perceptions
- 2019
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Ingår i: Nursing Open. - : Wiley online. - 2054-1058. ; , s. 1-11
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Tidskriftsartikel (refereegranskat)abstract
- Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end‐of‐life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given.Descriptive cross‐sectional.MethodsRegistered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study‐specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non‐parametric statistics.Results:Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.
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| 22. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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International survey of the cancer nurse specialist role, skills and competences – analysis of regulation documents and curriculums
- 2019
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The increasing number of patients diagnosed, treated, and surviving cancer, represents a major challenge for the health-care all over the world in order to meet patients’ needs of surveillance, rehabilitation and supportive care. In order to deliver high quality care, the cancer nurse specialists’ role, skills and competence need to be adjusted to meet this challenges. Aim: The aim was to review cancer nurse specialists’ field of competence, role and responsibility in a global perspective.Design and method: A qualitative content analysis content with deductive approach of 16 national and international documents.Results: Four themes describe the role and competence framework for cancer nurse specialists. The nursing process describe the specific areas of competence within the trajectory of care focusing on prevention of cancer, cancer care and treatment, specialised care and rehabilitation during the entire care process, cancer survivorship, cancer as a chronic disease, palliative care and end of life care. Remaining three themes focused Leadership, Continuous professional development/ Educator and Evidence based care and quality improvement.Conclusion: Cancer nurse specialists has a key role for providing comprehensive supportive care to patients during the whole trajectory of care with emphasis on patients’ symptoms, problems and needs. This area of competence together with leadership, continuous professional development, role as educator and responsibility for evidence based care and quality improvement is evident in the revised Swedish competence framework for cancer nurse specialists.
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| 26. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Patients Treated for Hematologic Malignancies : Affected Sexuality and Health Related Quality of Life
- 2015
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Ingår i: Cancer Nursing. - : Wolters Kluwer. - 0162-220X .- 1538-9804. ; 38:2, s. 99-110
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sexuality in relation to Health- Related Quality of Life (HRQoL) is mostly studied with younger patients as participants who have undergone bone marrow transplantation and concerns fertility and/or sexual function. However, patients with hematologic malignancies such as DLBCL, CLL or AML most often are above their fifties and are treated with chemo- or chemoimmunotherapy.Objective: The aim was to examine how sexuality and HRQoL was affected in patients with hematologic malignancies, at baseline compared to one month after chemo- or chemoimmunotherapy.Methods: Data were collected twice with a longitudinal design, using The Sexual Adjustment Questionnaire - S and EORTC QLQ C30.Results: Thirty-two patients responded. The importance of sexuality, sexual desire and sexual ability decreased one month after treatment and distressing symptoms such as feelings of tiredness occurred more frequently, compared to baseline. At the same time improvement in Global health status/QoL as well as affected functions in HRQoL was reported.Conclusion: The findings are of significance for nurses in cancer care as it highlights that sexuality and HRQoL needs to be considered also in older patients with hematologic malignancies when fertility issues are of less importance. Implication for practice:In order to meet these patients’ needs regarding sexuality and HRQoL the care must provide greater consistency and continuity. One way is to organize the care in a patient-centered way where patients continuously meet a nurse guided by the idea of holistic individual nursing care throughout the care trajectory.
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| 27. |
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| 28. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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Påverkad sexualitet, kroppsuppfattning och hälsorelaterad livskvalitet hos patienter behandlade för maligna blodsjukdomar : en longitudinell studie
- 2015
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Ingår i: Multiprofessionellt samarbete för en jämlik vård.
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Konferensbidrag (refereegranskat)abstract
- BakgrundLongitudinella studier som undersöker sexualitet, kroppsuppfattning och hälsorelaterad livskvalitet saknas för medelålders och äldre patienter som behandlats med kemoterapi eller kemoimmunoterapi för maligna blodsjukdomar.SyfteSyftet var att beskriva och undersöka förändringar i sexualitet, kroppsuppfattning och hälsorelaterad livskvalitet hos patienter behandlade för maligna blodsjukdomar, från baseline till sex månader efter behandlingen.MetodTjugo patienter 45 år och äldre som behandlats för DLBCL, KLL eller AML deltog. Data samlades in vid baseline, en - och sex månader efter behandling med hjälp av tre instrument; SAQ-S, BIS och EORTC QLQ-C30. Deskriptiv- och icke-parametrisk statistik.ResultatEn månad efter behandlingen var patienternas sexualitet påverkad avseende intresse (P=.005), funktion (P=.031), tillfredsställese (P=.016, P=.004) och relation. Samtidigt rapporterade patienterna förbättrad hälsorelaterade livskvalitet jämfört med baseline och att kroppsuppfattningen var påverkad i liten grad. Efter sex månader rapporterade patienterna förbättringar inom samtliga områden, med undantag för sexuell relation. Kroppsuppfattning var i liten grad påverkad efter en månad och efter sex månader rapporterade 50 % av patienterna att kroppsuppfattning inte alls var påverkad. Beträffande HRQoL, rapporterade patienterna successivt förbättrade värden under studieperioden (statistiskt signifikant).Slutsats och implikation för omvårdnadPatienter 45 år och äldre som behandlats för maligna blodsjukdomar rapporterade problem avseende sexualitet, kroppsuppfattning och hälsorelaterad livskvalitet under och efter behandling, med rapporterade förbättringar inom samtliga områden sex månader efter behandling. Eftersom intresse för sexualitet visade sig vara lågt för flertalet av patienterna bör stödet anpassas individuellt till patients behov. Patientcentrerad vård föreslås där patienterna kontinuerligt träffar en sjuksköterska som ger holistisk omvårdnad.
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| 34. |
- Olsson, Cecilia, 1971-, et al.
(författare)
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The Pediatric Inventory for Parents : Swedish Translation and Psychometric Testing
- 2018
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Ingår i: Journal of Pediatric Nursing. - : Saunders Elsevier. - 0882-5963 .- 1532-8449. ; 42, s. E97-E102
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Tidskriftsartikel (refereegranskat)abstract
- The Pediatric Inventory for Parents (PIP) measures parental stress related to caring for a child with an illness. However, no Swedish translation is available. Purpose: This study reports a Swedish translation of the PIP and psychometric properties of the instrument. Design and Methods: This is a descriptive/methodological paper. The PIP was translated and culturally adapted to Swedish, and comprehensibility was tested. Data were collected twice from 48 parents of children with different illnesses, and initial psychometric properties of the instrument were examined. The IES-R (Impact of Event Scale-Revised) was used for concurrent validity. Results: The Swedish version of the PIP demonstrated good correlations with the IES-R, and temporal changes were similar. Endorsement frequencies and test-retest were also satisfactory. When comparing groups of parents, the parents of children with cancer were statistically significantly more distressed, both on total score and for emotional distress and role function. Discriminative validity was demonstrated by comparing parents of children with cancer with parents of children with other diseases. Conclusions: The Swedish version of the PIP seems to be a valid and reliable instrument. However, as we used relatively small sample, for the future, we suggest further testing with larger samples. Practice Implications: Clinicians and researchers seeking to measure parental distress in chronic illness could use the Swedish version of the PIP.
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| 35. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Callosotomy in children - Parental experiences reported at long-term follow-up
- 2018
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050 .- 1525-5069. ; 86, s. 91-97
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Tidskriftsartikel (refereegranskat)abstract
- Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need. (C) 2018 Published by Elsevier Inc.
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| 36. |
- Ringnér, Anders, 1975-, et al.
(författare)
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Person-centred information to parents in paediatric oncology (the PIFBO study) : A study protocol of an ongoing RCT.
- 2015
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Ingår i: BMC Nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method.METHODS/DESIGN: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses.DISCUSSION: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective.TRIAL REGISTRATION: Clinical trials NCT02332226 (December 11, 2014).
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| 37. |
- Sundström, Johan, Professor, 1971-, et al.
(författare)
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Rationale for a Swedish cohort consortium
- 2019
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Ingår i: Upsala Journal of Medical Sciences. - : Taylor & Francis Group. - 0300-9734 .- 2000-1967. ; 124:1, s. 21-28
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Tidskriftsartikel (refereegranskat)abstract
- We herein outline the rationale for a Swedish cohort consortium, aiming to facilitate greater use of Swedish cohorts for world-class research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure would enable more precise research findings and facilitate research on rare exposures and outcomes, leading to better utilization of study participants' data, better return of funders' investments, and higher benefit to patients and populations. We motivate the proposed infrastructure partly by lessons learned from a pilot study encompassing data from 21 cohorts. We envisage a standing Swedish cohort consortium that would drive development of epidemiological research methods and strengthen the Swedish as well as international epidemiological competence, community, and competitiveness.
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| 38. |
- Verdinelli, Cecilia, et al.
(författare)
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A long-term patient perspective after hemispherotomy - A population based study.
- 2015
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Ingår i: Seizure. - : Elsevier BV. - 1532-2688 .- 1059-1311. ; 30, s. 76-82
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Tidskriftsartikel (refereegranskat)abstract
- Explore the long-term life situation for Swedish hemispherotomy patients reporting not only seizure outcome but also patients' perspectives on function, quality of life (QoL) and satisfaction with the surgery.
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