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  • 1. Carol, Tishelman
    et al.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eva, Broberger
    Hamberg, Katarina
    Mirjam, Sprangers
    Are the most distressing concerns among patients with lung cancer adequately assessed?: A mixed-methods study2010In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 28, no 11, p. 1942-1949Article in journal (Refereed)
    Abstract [en]

    Purpose. Standardized questionnaires for patient-reported outcomes are generally composed of specified predetermined items, although other areas may also cause patients distress. We therefore studied reports of what was most distressing for 343 patients with inoperable lung cancer (LC) at six time points during the first year postdiagnosis and how these concerns were assessed by three quality-of-life and symptom questionnaires.

    Patients and Methods. Qualitative analysis of patients' responses to the question “What do you find most distressing at present?” generated 20 categories, with 17 under the dimensions of “bodily distress,” “life situation with LC,” and “iatrogenic distress.” Descriptive and inferential statistical analyses were conducted.

    Results. The majority of statements reported as most distressing related to somatic and psychosocial problems, with 26% of patients reporting an overarching form of distress instead of specific problems at some time point. Twenty-seven percent reported some facet of their contact with the health care system as causing them most distress. While 55% to 59% of concerns reported as most distressing were clearly assessed by the European Organisation for Research and Treatment for Cancer Quality of Life Questionnaire Core-30 and Lung Cancer Module instruments, the Memorial Symptom Assessment Scale, and the modified Distress Screening Tool, iatrogenic distress is not specifically targeted by any of the three instruments examined.

    Conclusion. Using this approach, several distressing issues were found to be commonly reported by this patient group but were not assessed by standardized questionnaires. This highlights the need to carefully consider choice of instrument in relation to study objectives and characteristics of the sample investigated and to consider complementary means of assessment in clinical practice.

  • 2.
    Henoch, Ingela
    et al.
    Sahlgrenska Academy at the University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    The influence of symptom clusters and the most distressing concerns regarding quality of life among patients with inoperable lung cancer2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 3, p. 236-241Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To explore the influence of symptom clusters and the most distressing concerns on global rating of quality of life (QoL) among patients with inoperable lung cancer (LC) over a three-month period following diagnosis.

    METHODS: Data were derived from a longitudinal study dealing with the symptom experiences of 400 patients with LC at three time points: close to diagnosis and one and three months later. The symptom clusters were derived from a QoL questionnaire using factor analysis, which resulted in three clusters: the Respiratory cluster, the Pain cluster and the Mood cluster. The most distressing concerns were derived from responses to a free listing question ('What is most distressing at present') and were categorised under three dimensions: Bodily distress, Life situation with LC and Iatrogenic distress. Cross-sectional, multivariate regression analyses with QoL as a dependent variable were used to determine predictors (symptom clusters and most distressing concerns) at the three time points.

    RESULTS: All three symptom clusters predicted QoL at each time point. Close to diagnosis, none of the dimensions of most distressing concerns predicted QoL, while the dimension Bodily distress was a significant predictor of QoL after one month. The Life situation with LC dimension was a significant predictor of QoL three months after diagnosis.

    CONCLUSIONS: Symptom clusters are important to LC patients' QoL and need to be acknowledged by healthcare professionals. The present study shows the importance of patients' descriptions of key concerns, which vary from diagnosis onwards, and urges healthcare professionals to be vigilant to such changes.

  • 3.
    Hjorth, Elin
    et al.
    Karolinska Institutet.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Institutet.
    Tomas, Sejersen
    Karolinska University hospital.
    Christina, Renlund
    Kreicbergs, Ulrika
    Ersta Sköndal university collage.
    Parents’ experiences of the care of their child with spinal muscular atrophy type 1 and 2: A nationwide survey2014Conference paper (Refereed)
    Abstract [en]

    Background: Spinal muscular atrophy (SMA) is a rare genetic progressive neuromuscular disorder. The most severe form is type 1, which often is fatal the first year of life without respiratory support. Type 2 has moderate severity but is still associated with severe symptomatology. To improve the situation for the affected families the aim of this study was to explore how parents of children living with SMA type 1-2, and parents who have lost their children in SMA type 1-2 experienced health care during their child's illness. Material and Methods: The National Board of Health and Welfare was contacted to identify children born between the years 2000-2010 in Sweden and later diagnosed with SMA type 1-2. Subsequently, parents were identified through the Swedish Tax Agency. The questionnaires, developed based on interviews with parents of children with SMA and health care professionals, were mailed to parents in February 2013. Thirteen of 14 parents of 7 living children (93%) and 48 of 56 (86%) parents of 30 deceased children participated. All children except one of those whose parents were eligible for participation were represented in the study. Results: A majority of the parents were confident with the care of their child, e.g. decision making, and that they felt that the staff respected them. However, bereaved parents were more satisfied with the care than those with a child living with SMA. It was particularly difficult for the parents to accept the disease progression and to have to force their child to undergo vital treatments and examinations. It was also distressing for the parents to most often be the ones to take the initiative for care themselves. Conclusion: In order to reduce suffering of children with SMA, and thus their parents, new routines for examinations and treatments need to be developed. In addition, health care personnel need to initiate care of the child with SMA and thereby unburden the parents. 

  • 4. Ingela, Henoch
    et al.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Wilde-Larsson, Bodil
    Tishelman, Carol
    Perception of quality of care: comparison of the opinions of patients’ with lung cancer and their family members2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 3-4, p. 585-594Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. To explore potential differences within dyads of patients’ with lung cancer and family members’ judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics.

    Background. High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation.

    Design. Cross-sectional survey design. Method. A patient and family member version of the abbreviated questionnaire Quality from Patients’ Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon’s signed rank test was used to identify potential differences within 51 patient–family member dyads’ quality of care ratings. Relationships between Quality from Patients’ Perspective dimensions and demographic and health-related variables were examined with Spearman’s correlations.

    Results. Patient–family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension ‘socio-cultural approach’. Older patients were found to rate the physical–technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical–technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did.

    Conclusions. Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members’ opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members’ ratings should be interpreted with precaution, as it could diverge from patients’ own opinion. Relevance to clinical practice. The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients’ nor family members’ expectations, which is an important message to healthcare professionals and which would demand further exploration.

  • 5.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Att leva med lungcancer: patienters perspektiv på sjukdom och vård2009Report (Other academic)
  • 6.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Att leva med lungcancer: patienters upplevelser av sjukdom och vård2011Report (Other academic)
  • 7.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Clock time and Embodied time experienced by patients with inoperable lung cancer2010In: The 16th International Conference on Cancer Nursing, Atlanta, USA, 2010Conference paper (Other academic)
  • 8.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Daljunkaregården: ett akademiskt sjukhem?2010Report (Other (popular science, discussion, etc.))
  • 9.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Introduktionsprogram för sjuksköterskor inom äldrevården2009Report (Other (popular science, discussion, etc.))
  • 10.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Symtom, besvär och tid hos patienter med lungcancer2009Doctoral thesis, monograph (Other academic)
  • 11.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Symtomupplevelse hos kvinnor och män med avancerad lungcancer: ett genusperspektiv2005Report (Other academic)
  • 12.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Vårdkvalitén ur ett lungcancerpatient- och närståendeperspektiv2010Report (Other academic)
  • 13.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Broberger, Eva
    Tishelman, Carol
    An inductive study of the most distressing concerns and relation to EORTC QLQ C-30+LC13 among women and men with inoperable lung cancer during one year post diagnosis2007In: The European Cancer Conference (ECCO) 14, Barcelona, Spain, 2007Conference paper (Other academic)
  • 14.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Carol, Tishelman
    Hamberg, Katarina
    Clock Time and Embodied Time Experienced by Patients With Inoperable Lung Cancer2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 1, p. 55-63Article in journal (Refereed)
    Abstract [en]

    In this study, we explore how patients with inoperable lung cancer (LC) discuss their experiences of time, based on content analysis of open interviews with 35 patients 1 year after diagnosis, using Davies' distinction between "clock time" and "embodied time" as sensitizing concepts. Two interrelated themes were derived: (1) aspects related to the healthcare system, with 3 subthemes: waiting times in the healthcare system, limited time for patient-professional contact, and limited time for coordination of services, and (2) existential aspects, with subthemes: the future with LC and managing an uncertain and finite life with LC. Time could be experienced as problematic for these patients, when limited or lacking or through long periods of waiting, especially when these periods occurred without adequate preparation or information. This contributed to exacerbation of these patients' existing sense of uncertainty, their perception of care as impersonal and insecure, and their need to remain alert and act on their own behalf. Awareness of the seriousness of their disease and the prospect of a limited lifetime was described as increasing uncertainty about dying and fear of certain death. People also described efforts to constructively deal with their situation by reprioritizing their remaining time, having increased appreciation of some aspects of daily life, and living consciously in the present. This analysis suggests a collision between clock time, which steers the healthcare system, and embodied time, as experienced by individuals. Greater attention to psychosocial needs is suggested as one means of positively affecting patients' experiences of time and uncertainty.

  • 15.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Bereaved siblings' advice to health-care professionals working with children with cancer and their siblings2014Conference paper (Other academic)
    Abstract [sv]

    Syskons råd till vårdpersonal: En nationell uppföljning 2 till 9 år efter förlusten av en bror eller syster i cancer

    Lövgren, M., Grenklo-Bylund, T., Jalmsell, L., Eilegård, A., Kreicbergs, U.

    Bakgrund: När ett barn drabbas av cancer förändras livet för hela familjen. De friska syskonen kan uppleva minskad uppmärksamhet från föräldrar, svårigheter i skolan samt post-traumatiska stress symtom. För att förbättra situationen för syskon till cancersjuka barn syftar denna studie till att undersöka vilka råd syskon ger vårdpersonal som arbetar med cancersjuka barn och deras familjer.

    Metod: År 2009 genomfördes en rikstäckande enkätstudie av syskon som mist en bror eller syster i cancer två till nio år tidigare. Av 240 inbjudna syskon deltog 174 (73 %). Dessa har svarat på en öppen fråga om vilka råd de skulle vilja ge till vårdpersonal som arbetar med barn med cancer och deras familjer. För att erhålla större förståelse för svaren på den öppna frågan hölls en fokusgruppdiskussion 2014 med syskon som mist en bror eller syster. Data har bearbetats med innehållsanalys. 

    Resultat: Det vanligaste rådet syskonen gav till vårdpersonal var att de ville få psykosocialt stöd. Informationen kring patientens sjukdom och vård behövde förbättras liksom möjligheten för syskon att få vara mer delaktiga i sin bror/systers vård. Syskonen önskade att vårdpersonalen skulle visa mer empati, vara ”naturlig”, samt förmedla hopp men ändå vara realistiska. De önskade stödjande åtgärder från diagnos till år efter dödsfallet. Råd om den fysiska vårdmiljön framkom också liksom vikten av att föräldrarna fick stöd i att få syskonen delaktiga i patientens vård.

    Slutsats: Det behövs en utveckling av interventioner framförallt gällande psykosocialt stöd, information samt involvering av syskon från diagnos till år efter dödsfallet. Stöd till föräldrar om hur de kan involvera syskon bättre behövs också.  

  • 16.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Institutet.
    Gustavsson, Petter
    Karolinska Institutet.
    Melin, Bo
    Karolinska Institutet.
    Rudman, Ann
    Karolinska Institutet.
    Neck/shoulder and back pain in new graduate nurses: a growth mixture modeling analysis2014In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 51, no 4, p. 625-639Article in journal (Refereed)
    Abstract [en]

    Background: Although it is well known that musculoskeletal disorders are common among registered nurses, little longitudinal research has been conducted to examine this problem from nursing education to working life.

    Objectives: The aim was to investigate the prevalence and incidence of neck/shoulder and back pain in nursing students in their final semester, and one and two years after graduation. Furthermore, to identify common trajectories of neck/shoulder and back pain, and explore sociodemographic and lifestyle-related factors, contextual factors and health outcome that might be characteristic of individuals in the various trajectories.

    Design: Longitudinal study following nursing students from their final year of studies, with follow-ups one and two years after graduation.

    Settings and participants: Nursing students who graduated from the 26 universities providing undergraduate nursing education in Sweden 2002 were invited to participate(N = 1700). Of those asked, 1153 gave their informed consent.

    Methods: The participants answered postal surveys at yearly intervals. Descriptive statistics were used to analyze prevalence and incidence of pain, and growth mixture modeling was applied to identify different homogeneous clusters of individuals following similar trajectories in pain development across time.

    Results: The prevalence of neck/shoulder and back pain remained constant over time(around 50% for neck/shoulder pain and just over 40% for back pain). Six different development trajectories for each symptom were found, reflecting patterns of stable pain levels or variation in levels over time: one symptom-free group, two decreasing pain groups, two increasing pain groups, and one chronic pain group. With few exceptions, the same factors (sex, children, chronic disease, working overtime, work absence, sickness presence, physical load, depression, self-rated health, sleep quality and muscular tension) were associated with neck/shoulder and back pain trajectories. Different types of physical load characterized new nurses with neck/shoulder pain and back pain respectively.

    Conclusions: The high prevalence of pain among nursing students and among new graduate nurses, suggests that it would be effective to implement preventive strategies already during nursing education, but they should also preferably continue after graduation. Many factors associated with pain in the neck/shoulder and back seem to be modifiable, and thereby constitute targets for preventive strategies.

  • 17.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Institute.
    Jalmsell, Li
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9 years later2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 4, p. 435-440Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2–9 years later.

    Methods

    This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000–2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann–Whitney U-test was conducted to investigate if the experiences influenced anxiety 2–9 years later.

    Results

    The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2–9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.

    Conclusion

    It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on

  • 18.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Jensen, Jennie
    Karolinska Institutet.
    Jelf Eneqvist,, Lisa
    Karolinska Universitetssjukhuset.
    Tishelman, Carol
    Karolinska Institutet.
    Upplevd vårdkvalitet: patienter på Lung-Allergikliniken, Karolinska universitetssjukhuset delger sina erfarenheter2012Report (Other academic)
  • 19.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    En modell för bättre värdegrund i vård och omsorg för äldre hemmahörande på särskilt boende2011Report (Other academic)
  • 20.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leveälahti, Helena
    Tishelman, Carol
    Runesdotter, Sara
    Hamberg, Katarina
    Koyi, Hirsh
    Time spans from first symptom to treatment in patients with lung cancer - The influence of symptoms and demographic characteristics2008In: Acta Oncologica, ISSN 0001-6381, Vol. 47, no 3, p. 397 - 405 Article in journal (Refereed)
    Abstract [en]

    Background. Cancer stage at diagnosis is the most important prognostic factor for lung cancer (LC), but most patients are diagnosed with advanced disease with many and intense symptoms. This study explores relationships between LC patients' first symptoms, symptoms triggering health care system (HCS) contact, demographic/clinical characteristics, and time spans in the care trajectory from first symptom(s) to treatment start. Materials and Methods. Medical records were examined from all 314 patients diagnosed with primary LC in 2003 at a Department of Respiratory Medicine, in Stockholm Sweden. Descriptive analysis was used to examine symptoms and time spans in the care trajectory. Cox regression analysis was conducted to explore the influence of symptoms and demographic/clinical characteristics on the time spans. Results. Tumor-specific symptoms led to HCS visits to a greater extent than did systemic symptoms, despite reports of weight loss, fatigue and appetite loss as common first symptoms. Minor differences between women and men were found regarding specific symptoms. The study confirms that the time spans from first symptoms reported to treatment start are extensive, exceeding Swedish national recommendations. A lump/resistance, neurological symptoms, appetite loss, hemoptysis and non-thoracic related pain were associated with significantly shorter time spans in the care trajectory. People >74 years old risked longer time span from first HCS visit to treatment start. Conclusion. This study indicates a need for a more efficient LC care trajectory. Elderly patients could be particularly vulnerable for longer time spans.

  • 21.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leveälahti, Helena
    Tishelman, Carol
    Runesdotter, Sara
    Koyi, Hirsh
    Influence of specific symptoms and demographic characteristics in the process leading to diagnosis and treatment of lung cancer2006In: 14th International Conference on Cancer Nursing: Conference Program and Abstract Book, Toronto, Canada, 2006Conference paper (Other academic)
  • 22.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Tishelman, Carol
    Runesdotter, Sara
    Symptoms and functional disturbances during the first year post-diagnosis in men and women with inoperable lung cancer2006In: 14th International Conference on Cancer Nursing: Conference Program and Abstract Book, Toronto, Canada, 2006Conference paper (Other academic)
  • 23.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Tishelman, Carol
    Sprangers, Mirjam
    Koyi, Hirsh
    Hamberg, Katarina
    Symptoms and problems with functioning among women and men with inoperable lung cancer- A longitudinal study2008In: Lung Cancer, ISSN 0169-5002, E-ISSN 1872-8332, Vol. 60, no 1, p. 113-124Article in journal (Refereed)
    Abstract [en]

    The aim of this study is to compare the prevalence and intensity of symptoms and problems with functioning between women and men with inoperable lung cancer (LC) during 3 months post-diagnosis. One hundred and fifty-nine patients completed the EORTC QLQ C-30 + LC13 at three time points: close to diagnosis and prior to treatment, and one, and 3 months later. Descriptive cross-sectional analyses and longitudinal analyses using repeated measure ANOVA were conducted. These patients reported many and intense symptoms and problems with functioning. The most salient finding from the cross-sectional analysis was that women reported both more, and more intense problems with emotional functioning close to diagnosis. Statistically significant improvements over time were found in both men and women with regard to emotional functioning, dyspnea, insomnia, cough, pain in arm/shoulder, while physical functioning, fatigue, constipation, dysphagia, peripheral neuropathy and alopecia deteriorated significantly over time. The longitudinal analyses suggest that, with the exception of emotional functioning, gender differences were not only related to biological sex alone, but were also found to be related to other components of the patients’ life situation, such as education, age, civil status and type of LC. Sensitivity to different symptom experiences and responses to those experiences between and within women and men is also necessary in the management of symptoms in patients with inoperable LC.

  • 24.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Tishelman, Malin
    Karolinska Institutet.
    What is most distressing at present?: A mixed method study about patients with inoperable lung cancer2008Conference paper (Refereed)
    Abstract [en]

    People with lung cancer (LC) experience many distressing concerns. Standardizedassessment questionnaires tend to use predetermined items reflectingprofessionals’ perspectives of important issues, but even other areas may causedistress for patients. We therefore studied spontaneous reports of what isMOST distressing for 343 patients with inoperable LC during the 1st year postdiagnosis, and explored potential gender differences, while controlling for age.Patients with inoperable LC were recruited close to time of diagnosis throughtwo university hospitals. They were asked to respond to an open inductivequestion “What do you find most distressing at present?” at 6 timepoints: closeto diagnosis and prior to treatment (T1), two weeks after T1, and one, three, sixand 12 months after T1. The manifest content of all responses was analyzed.Descriptive statistics and logistic regressions were used to meet the study aims.Results are presented in 3 overarching dimensions: distress related to the body,distress related to life situation and iatrogenic distress. Distress related to thebody was reported by 90% of patients at one or more time points during the1st year post-diagnosis, and was more common over time. Distress related tolife situation was reported by 80% of the patients at one or more time points,becoming less common over time. Iatrogenic distress, i.e. distress caused bycontact with the health care system (HCS) was reported by 27% of this sampleas most distressing at some time point during this 1st year. Logistic regressionsshowed that men > 64 years reported most distress related to breathingmore often than did women in the same age group during the 1st year postdiagnosis. Women >64 years reported most distress related to “outlook” moreoften than did men in the same age group during this year. Women < 65years also more commonly reported most distress related to emotionalproblems at any time point in the 1st year, and reported most distress relatedto the HCS close to diagnosis more often than men in the same age group did.We found this patient group reported many and varied concerns as MOSTdistressing, with many concerns beyond the scope of common assessmentinstruments. A disturbing finding was how common reports of most distresswere related to the HCS in this very symptomatic group of people. Both genderand age seem to be factors influencing distress related to breathing, outlook,emotional problems and contact with the HCS.

  • 25.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Wilde-Larsson, Bodil
    Hök, Johanna
    Leveälathi, Helena
    Tishelman, Carol
    Push or pull?: The relationship between quality of care and use of complementary and alternative medicine among patients with lung cancer in Sweden2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 4, p. 311-317Article in journal (Refereed)
    Abstract [en]

    Little is known about relationships between quality of care (QoC) and use of complementary and alternative medicine (CAM) among patients with lung cancer (LC). Purpose: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC. Methods: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument “Quality from the patient’s perspective” were analyzed. Results: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care. Conclusions: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

  • 26. Pettersson, Susanne
    et al.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eriksson, Lars
    Moberg, C
    Svenungsson, E
    Gunnarsson, I
    Welin Henriksson, E
    An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life2012In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 41, no 5, p. 383-390Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage). 

    Methods: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index. 

    Results: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001). 

    Conclusion: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.

  • 27. Pettersson, Susanne
    et al.
    Lövgren, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eriksson, Lars
    Welin Henriksson, Elisabeth
    Symptom distress related to systemic lupus erythematosus, analysis of patient account and comparison to standardised assessment2010In: The European league against rheumatism, Rom, Italien, 2010Conference paper (Other academic)
    Abstract [en]

    Background: Systemic lupus erythematosus (SLE) is a heterogenic disease with individual variation of both organ involvement and symptom perception. Despite this broad spectrum of symptoms clinical assessment often focus on predefined aspects of the disease, where patients are asked to rate or assess according to standards. An open approach to different aspects of the disease where the question of which SLE symptom patients perceive as most distressing need more specific attention. This abstract has focus on the most troublesome SLE related symptoms as reported by the patients themselves. Objectives: To explore patient reported SLE symptoms in relation to age and disease duration, and comparison with instruments assessing disease activity and health related quality of life. Methods: Patients with SLE (=4 ACR criteria)(n=309 women 91,3%, mean-age 47,3yrs, mean disease-duration 15,2yrs) recruited to a cross-sectional cohort study answered the written question "What SLE related symptoms have you experienced as most difficult during your disease?" followed by "What symptoms do you presently perceive as most difficult?" together with a questionnaire assessing health-related quality of life (EQ5D). The inclusion also included an assessment by a rheumatologist regarding disease activity and disease damage. Results: The respondent's answers included a broad spectrum of symptoms. A list of codes was validated and used to sort each patient's statements. Twenty categories with statements from more than ten respondents were identified. The three most frequent categories were distress of fatigue and distress of pain (statements from 51% respondents each) and distress from musculoskeletal structures (46,3%). Each category was compared according to respondent's age and disease duration. Patients with distress related to kidney function (mean 41,7yrs p=0,018) or swelling (mean 41,6yrs p=0,041) were younger. Respondents reporting distress from eyes or mouth were older (mean 53,1 yrs, p= 0,007). Patients (10%) perceiving no present symptom at inclusion had lower disease activity (SLAM, p<0,001) and SLE disease damage (SLICC, p=0,013) and higher self-rated health-related quality of life (EQ5D, p<0,001) than those reporting any kind of symptom distress. Conclusion: The symptoms most frequent reported by patients with SLE were fatigue, pain and musculoskeletal distress and these were described independent of age or disease duration. The disease activity score SLAM covered most patient-reported SLE related distress. When EQ5D were added to the comparison, distress related to perceived physical ability was also identified. Neither SLAM nor EQ5D mentions distress related to treatment, assessment or examination, and healthcare-givers should have this in mind when meeting these patients. Other categories not covered by SLAM combined by EQ5D were swelling and infections. These symptoms were reported by few patients and can be described to have the character of general discomfort. The study indicates that a combination of standardised instruments might well discover patient's perception of SLE, but are unlikely to point out each patient's whole experience of disease related discomfort. This should be taken into account by care-givers in the clinic to enable acknowledgement of the individual person's experience of the disease.

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