| 1. |
- Bergenmar, Mia, et al.
(författare)
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Audio-recorded information to patients considering participation in cancer clinical trials - a randomized study
- 2014
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Ingår i: Acta Oncologica. - 1651-226X. ; 53:9, s. 1197-1204
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Tidskriftsartikel (refereegranskat)abstract
- Background. Patient information in cancer clinical trial is challenging. The value of audio-recording interventions for patients considering participating in clinical trials is unclear. The primary aim of this randomized study was to investigate effects of audio-recorded information on knowledge and understanding in patients considering participation in a clinical trial. Material and methods. Patients scheduled for information about a phases 2 or 3 trial by one of the 13 participating oncologists at the Department of Oncology during the study period (2008-2013) were eligible. The intervention consisted of an audio-recording on compact disc (CD) of the information at the medical consultation in which the patients were informed about a trial. Knowledge and understanding was measured by the questionnaire, Quality of Informed Consent. Results. A total of 130 patients were randomized, 70% of the calculated sample size (n = 186). Sixty-seven patients were randomized to the intervention. In total, 101 patients (78%) completed questionnaires. No statistical significant differences were found between the groups with respect to knowledge and understanding. The level of knowledge was relatively high, with the exceptions of the risks associated with, and the unproven nature of, the trial. Overall, patients who declined participation scored statistically significant lower on knowledge. Conclusion. The present study was underpowered and the results should therefore be interpreted with caution. Still, 130 patients were included with a response rate of 78%. A CD including the oral information about a clinical trial did not show any effects on knowledge or understanding. However, the levels of knowledge were high, possible due to the high levels of education in the study group. Information on risks associated with the trial is still an area for improvement.
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| 2. |
- Bergenmar, Mia
(författare)
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Cutaneous malignant melanoma : aspects on prevention
- 2001
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The general aims of the present thesis were to delineate factors of importance for prevention of cutaneous malignant melanoma (CMM). Three samples of patients with CMM, one sample of patients with dysplastic nevus syndrome (DNS) and a sample from the general population were studied. The patients with CMM, Stage I (n=231), were included in an information program aiming at increased satisfaction with information and knowledge about melanoma. A total of 694 patients were included in a study to investigate factors of importance for presenting with CMM > 2.0 min and 54 patients were investigated regarding signs and symptoms of CMM < 2.0 mm. Sun-related behaviours and attitudes to sunbathing were studied in a sample of DNS-patients (n=79). Reasons for nonattendance in a population based screening program for melanoma were investigated in a sample of the general population (n=501) out of which 201 individuals were identified as non-attenders. The Hospital Anxiety and Depression (HAD) scale, and study specific questionnaires concerning knowledge about melanoma and sun-related behaviours were used in combination with interviews. Data concerning medical status were collected from patient files and from the Regional Melanoma Registry. Results: The information program increased satisfaction with information and knowledge about melanoma. Women and men participated to the same extent. Histogenetic type was the only factor distinguishing CMM with tumour thickness > 2.0 mm from thinner lesions. Nodular melanomas < 2.0 mm appeared to be smaller in diameter and were more often described as a new lesion compared to SSM. Family members played an important role in promoting medical attention of suspicious lesions. Accessibility to medical service was important in screening and early detection. Forgetfulness, lack of time and no perceived need for examination were the most frequently reported reasons for nonattendance in skin cancer screening. High and equal levels of knowledge about melanoma were found among attenders and non-attenders. A higher proportion of men was non-attenders. Extensive UV-exposure, although not always expressed in terms of sunbathing, was reported by DNS-patients. The most important reasons for sunbathing were attractiveness and to enjoy the warmth of the sun. The majority estimated their own risk for melanoma as equal or lower compared to the general population. Conclusions: A number of obstacles in melanoma prevention were delineated, but aspects of improving prevention of CMM were also revealed, such as targeted group information, accessibility to medical services, notification that new lesions with small diameter may warrants medical advice and that relatives are important in promoting early detection.
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| 3. |
- Dubois, Hanna, et al.
(författare)
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Patient participation in gastrointestinal endoscopy : From patients' perspectives
- 2020
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 23:4, s. 893-903
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patient participation is associated with satisfaction and improved health-related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area.OBJECTIVE: To gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway.METHODS: Semi-structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19-80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit.RESULTS: Five generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff 'invited' patients in decision making.DISCUSSION: This study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation.CONCLUSIONS: Endoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors.
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| 4. |
- Dubois, Hanna, et al.
(författare)
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Patient participation in tele-emergencies : experiences from healthcare professionals in northern rural Sweden
- 2022
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Ingår i: Rural and remote health. - 1445-6354. ; 22:4
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Telemedicine provides opportunities for access to health care in remote and underserved areas. In parts of northern rural Sweden telemedicine is used to connect a remote physician by a video-conference system to an emergency room, staffed by nurses during on-call hours. This can be called 'tele-emergency'. Patient participation, often described as mutual information exchange, a trustful relationship and involvement in decision-making, is challenged in emergency care by short encounters, deteriorating patients and a stressful work situation. Nevertheless, patient participation may be important for the patients' experience. Healthcare professionals (HCPs) have been identified as 'gatekeepers' for patient participation, therefore putting their perspective in focus is important. As emergency care in rural areas is increasingly turning toward telemedicine, patient participation in tele-emergencies needs to be better understood. The aim of this study was to explore and characterise HCPs' perspectives of patient participation in tele-emergencies in northern rural Sweden.METHODS: A qualitative design based on interviews was used. HCPs working in cottage hospitals in northern rural Sweden were included. Semi-structured interviews were performed, first, in multidisciplinary groups of three informants. Later, because of limited experience of tele-emergencies in the groups, individual interviews with HCPs with substantial experience were added. A qualitative content analysis of the interview transcripts was conducted.RESULTS: A total of 44 HCPs from northern inland Sweden participated in the interviews. The content analysis resulted in two themes, six categories and 19 subcategories. Theme 1, 'To see, understand, and to build trust through the digital barrier', contains descriptions of the interpersonal relationship between the patient and the HCPs, and the challenges when interacting with the patient during a tele-emergency. The informants also described a need for boundaries between the professional team and the patient. The categories in theme 1 are 'understanding the patient's point of view', 'building a trustful relationship', and 'needing a private space without the patient'. Theme 2, 'The (im)balance of power - tele-emergency reinforces the positions', mirrors the power asymmetry in the patient-professional relationship, and the potential impact of the tele-emergency on the different roles. Tele-emergencies were described as a risk that potentially could weaken the patient's position, but also as providing an opportunity to share power. Categories in theme 2 are 'medical conditions limit patient participation', 'patient involvement in decision-making requires understanding' and 'the inferior patient and the superior professionals'.CONCLUSION: This study sheds light on patient participation in tele-emergencies in a remote rural setting from the HCP's perspective. The tele-emergency set-up affected patient participation by interfering with familiar patient-HCP relationships and changing group dynamics in interactions with the patient. Due to the extensive changes of the conditions for patient participation imposed in tele-emergencies, suggestions for actions improving patient participation are made.
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| 5. |
- Hellbom, Maria, et al.
(författare)
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Cancer rehabilitation: A Nordic and European perspective.
- 2011
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Ingår i: Acta oncologica (Stockholm, Sweden). - 1651-226X. ; 50:2, s. 179-186
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Background. The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. Material and methods. Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. Results. Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. Discussion. In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care.
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| 6. |
- Karlsson, Emelie, et al.
(författare)
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Older patients' attitudes towards, and perceptions of, preoperative physical activity and exercise prior to colorectal cancer surgery : a gap between awareness and action
- 2020
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 28:8, s. 3945-3953
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Time for preoperative optimisation prior to colorectal cancer surgery is limited and older people tend to decline exercise interventions. This study sought to describe attitudes towards, and perceptions of, preoperative physical activity and exercise in older people prior to colorectal cancer surgery.METHODS: This is a qualitative interview study, analysed with inductive content analysis. Seventeen participants scheduled for colorectal surgery were recruited as a purposeful sample from two hospitals in Stockholm, Sweden. Individual semi-structured interviews were conducted, face-to-face (n = 8) or by telephone (n = 9).RESULTS: Nine participants were male, median age was 75 years (range 70-91). The theme, 'a gap between awareness and action', was identified based on two main categories: 'Attitudes towards preoperative physical exercise have a multifactorial base' and 'Preoperative physical exercise is possible with a push in the right direction'. The material described a gap between awareness of the benefits of physical activity and reports of performing physical activity. The reasons for the gap between thoughts and action in this respect seem to be multifactorial. Support from others emerged as an important possibility for overcoming the gap.CONCLUSIONS: A gap between the patients' awareness and action appeared in our material. Understanding this can guide healthcare professionals (HCPs) as to the support needed preoperatively. Advice on physical exercise before surgery should be specific, and individually tailored support for action should be offered. This support should also consider the individual's current physical activity and preoperative attitude towards physical exercise.
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| 7. |
- Rosenblad, Andreas, Fil. dr, docent, 1973-, et al.
(författare)
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Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden : a five-year cross-sectional study
- 2024
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Ingår i: Quality of Life Research. - : Springer Nature. - 0962-9343 .- 1573-2649. ; 33, s. 667-678
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.Methods: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal–Wallis test and linear regression.Results: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.Conclusion: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.
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| 8. |
- Sharp, Lena, et al.
(författare)
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No differences between Calendula cream and aqueous cream in the prevention of acute radiation skin reactions : results from a randomised blinded trial
- 2013
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 17:4, s. 429-435
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The purpose of this blinded, randomized clinical trial was to compare two topical agents (Calendula Weleda (R) cream vs. Essex (R) cream) in reducing the risk of severe acute radiation skin reactions (ARSR) in relation to adjuvant radiotherapy (RT) for breast cancer.Method: The primary endpoint was the difference in proportion of patients with ARSR, assessed with the Radiation Therapy Oncology Group/The Organization for Research and Treatment of Cancer Acute Radiation Morbidity Scoring Criteria (RTOG/EORTC scale) at follow-up. The secondary endpoints included patient reported outcome measures; Quality of Life Questionnaire (QLQ-C30), Sleep disturbances (MOS-sleep questionnaire) and symptoms from the irradiated area (visual analogue scale). Patients' experiences and adherence to the topical agents were also evaluated.Results: A total of 420 patients were randomised and 411 were analysed. With the exception of previous chemotherapy, the treatment groups were well balanced, both regarding treatment- and patient-related factors. The incidence of severe ARSR (RTOG/EORTC grade <= 2) at the follow-up visit was 23% (n = 45) in the Calendula group and 19% (n = 38) in the Essex group. We found no difference in severe ARSR between the groups at any point of assessment. The patients reported low levels of skin related symptoms and no statistically significant differences between the groups were found.Conclusions: No differences in ARSR between patients randomised to Calendula or Essex cream was found. ARSR seem to be a relatively limited problem, probably more influenced by treatment related factors than by choice of skin care products in this patient group.
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