Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012

Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012
Ventetid eller forberedelse? Støtte og omsorg til kvinder der skal opereres for kræft i æggestokkene Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012 Tak for invitationen til at præsentere min phd Enhed for Sygeplejeforskning, Klinisk Insititut, SDU * The presentation will be initiated by an introduction to the overall study topic, followed by background, aim and objectives. Subsequently the method in terms of scientific frame and study design will be addressed, followed by a presentation of the results. The presentation will be finished by describing the implications of the findings in relation to clinical practise and further research

Disposition Introduktion Baggrund Mål Metoder Resultater Konklusioner
Perspektiver Diskussion

Overordnet formål Styrke helbred og mestring Initiere sundhedsfremme
og tidlig rehabilitering lige fra behandling er besluttet Oplægget vil omhandle danske kvinder, som bliver opereret for … - i et omsorgsperspektiv The overall aim of the study was to strengthen health and coping in the women during their peri-operative period. By transforming the time before the surgery from waiting for treatment towards preparing, the study intended to initiate health promotion and rehabilitation right from the beginning of the treatment.

Videnskabelige publikationer
Seibaek L, Petersen LK, Blaakaer J, Hounsgaard L: Health and Socio-Economic Status. Factors impacting care and treatment in ovarian cancer patients. Nordic Nursing Research 2011(4): Seibaek L, Petersen LK, Blaakaer J, Hounsgaard L: Hoping for the best - preparing for the worst. The lived experiences of women undergoing ovarian cancer surgery. Epub ahead of print: European Journal of Cancer Care 2011 Nov 17 Seibaek L, Petersen LK, Blaakaer J, Hounsgaard L: Symptom interpretation and health care seeking in ovarian cancer. BMC Women’s Health 2011, 11:31. Seibaek L, Petersen LK, Blaakaer J, Hounsgaard L: Ovarian Cancer Surgery: Health and Coping during the Perioperative Period. Supportive Care in Cancer; Re-submitted 2012 Oplægget er baseret på følgende videnskabelige publikationer * Health and Socio-Economic Status. Factors impacting care and treatment in ovarian cancer patients Which has been published in Nordic Nursing Research Hoping for the best - preparing for the worst. The lived experiences of women undergoing ovarian cancer surgery. Which has been published in European Journal of Cancer Care Symptom interpretation and healthcare seeking in ovarian cancer. Which has been published in BMC Women’s Health And finally: Ovarian Cancer Surgery: Health and Coping during the Perioperative Period – which has been submitted.

Susan Krop Person Deltager
In caring science the professional focus is the health and life of human beings. In the following I will illustrate this by sharing the narrative of Susan with you* Susan is in her fifties; she has a part-time job, a husband and two grown up children. * During the last six months, she has felt increasingly unwell. She has seen her General Practitioner, and they have agreed that it might be her menopause. Susan doesn't get a physical examination until she starts to feel abdominal pain, and to vomit. After a couple of weeks, the diagnosis is a reality: advanced cancer of the ovaries. To health care professionals, this course of disease is rather common in ovarian cancer. To Susan herself and to her family, the diagnosis and treatment are fear-provoking landmark events. One of the reasons for this is that Susan is not simply her body. *She is also the person Susan who holds unique experiences, hopes, views, secrets, and resources. * and she lives her life in togetherness - with her family, at her workplace, and in her local area. Due to the long treatment period, and the high mortality rate, it will be very important for her to live a meaningful life during her treatment, to be able to manage side effects, and to be able to cope with the fear of recurrence and death.

Introduktion Baggrund Mål Metoder Resultater Konclusioner Perspektiver
Diskussion In the following I will present the background and objectives of the study * Danish women have a very high incidence and mortality rate of ovarian cancer. It is of crucial importance to diagnose and treat the disease as early as possible because the early stages have a good prognosis with a five-year survival of 80–90%, whereas survival rates declines to about 25% in the advanced stages. However, the majority (66%) are diagnosed in the advanced stages, and Furthermore 25% suffer from various sorts of comorbidities. This is a situation that seriously impacts the women’s health care seeking, their ability of going through with efficient treatment, and consequently also their survival.

DK: ↑ incidens ↑ mortalitet
Kræft i æggestokkene DK: ↑ incidens ↑ mortalitet (Grann et al 2011) Avanceret sygdom: 66% (Coleman et al 2011; Grann et al 2011) Co-morbiditet: 25 % (Robinson et al 2009)

Diagnose og behandling
Ætiologi oftest ukendt Uspecifikke symptomer Ingen sikker diagnose før operationen The reasons for developing ovarian cancer are mostly unknown. * The symptoms are vague and non-disease specific, and there are no valid screening methods. However, previous studies have identified a symptom cluster preceding diagnosis, and information campaigns and self-monitoring programmes for women at risk are available, but has not been implemented in Denmark. Due to the nature of the disease, it is often not possible to obtain a verified diagnosis prior to surgery. This circumstance puts a major psychological strain on the women and their families.

Behandlingsforløb The clinical pathway consists of a preoperative visit, surgery and follow up; all within three to four weeks. After the surgery, the clinical pathway depends on the final diagnosis and staging. * women with spread of the disease are treated with chemotherapy. Women with Stage IA or borderline disease, are treated with surgery alone and scheduled for follow-up. Women with benign conditions have completed their treatment.

Behandlingsforløb

Centralisering af behandlingen
Kontekst Kræftpakkeforløb (National Cancer Plan II) Centralisering af behandlingen (Fago-Olsen et al 2010) Accelererede patientforløb (Kehlet 2002) To improve survival the Danish government have guaranteed all citizens fast and free treatment for malignant diseases via the so-called “national integrated cancer pathways”. At the same time-period the National Danish Health Board and the Danish Gynaecological Cancer Group recommended that surgical treatment was centralised in five centres, in order to secure the presence of health professional expertise. This recommendation has taken quite some time to implement. In addition, a growing awareness of the importance of peri-operative optimisation gave rise to fast-track surgery.

Forberede kvinderne på kemoterapi Omfatte psykosociale aspekter
Fysiske og psykosociale helbredsproblemer skyldes både sygdom og behandling (Sun et al 2007) Plejen må også Forberede kvinderne på kemoterapi Omfatte psykosociale aspekter Integrere et patient perspektiv (Norlyk & Harder 2009; Seibaek et al 2010) The aim of the fast-track programmes was to improve the surgical outcome. But newly diagnosed women experience both physical and psycho-social health problems - caused by the disease AND it’s treatment. * But although the fast-track programmes definitely held substantial surgical and anaesthetic improvements, they needed further developing in terms of preparing the women for the chemotherapy, deal with psychosocial aspects and integrate patient perspectives.

Beskrive helbred, socio-økonomisk status, brug af sundhedsydelser
Mål Beskrive helbred, socio-økonomisk status, brug af sundhedsydelser Udforske kvindernes personlige erfaringer med at skulle opereres Undersøge alment helbred og mestring Udvikle og teste et præoperativt forberedelsesprogram The study purpose was to investigate health and coping, and to initiate early rehabilitation via a supportive care intervention. However, health, treatment, living conditions and personal experiences had to be investigated, before the development and preliminary tests of this intervention could take place. On that background the objectives of this study became * To describe the health, the socio-economic status, and the use of public healthcare in population level To explore the lived experiences of women undergoing ovarian cancer surgery in individual level To survey health and coping in women undergoing ovarian cancer surgery And to develop and preliminary test a supportive care intervention.

Introduktion Baggrund Mål Metoder Resultater Konklusioner Perspektiver
Diskussion The presentation of the method will be initiated by the theoretical background of the study. * The nursing profession encompass knowledge and skills, which are influenced by new knowledge within the caring and medical sciences, but also by new demands and politics in society. During the study the caring science perspective was rooted in “the Basic Principles of Nursing”. According to this basic care should draw upon and integrate various kinds of knowledge. In this theory the function of the nurse is defined as: “To assist people in activities contributing to their health or recovery that they would have performed unaided if they had had the necessary strength, will, or knowledge”

Sygeplejeteoretisk ramme
“at bistå den enkelte, syg eller rask, med at udføre de aktiviteter til fremme eller genvindelse af sundheden, som han ville udføre på egen hånd, hvis han havde den fornødne styrke, vilje eller viden ” (Henderson 1991)

Hvad gør mennesker sunde? Sense of Coherence (Antonovsky 1987)
Sundhedsfremme Hvad gør mennesker sunde? Sense of Coherence (Antonovsky 1987) In health promotion the focus is on what keeps individuals healthy, rather than on what makes them ill. Certain personal characteristics, which enable some to withstand the harmful effects of stress and maintain a good health, is conceptualised in the “Sense of Coherence”. Within this theoretical frame women with ovarian cancer will, although they may be severely diseased, still be autonomous and to some extent healthy individuals, if their Sense of Coherence is strong.

Handlinger tilpasset stressfulde situationer
Mestring Handlinger tilpasset stressfulde situationer De eksisterende ressourcer til at klare stressfulde situationer (Lazarus 1984)

ICF: Funktionelt helbred Krop ▪ Person ▪ Deltager
Rehabilitering ICF: Funktionelt helbred Krop ▪ Person ▪ Deltager (WHO 2001) The concept of rehabilitation was based on the International Classification of Functioning, Disability, and Health, which includes biological, psychological, and cultural perspectives on health. According to this, a human being is at a time a physical body, an individual person, and a participant – as illustrated in the narrative of Susan. * Finally coping was used as concept of investigation. During the study coping was understood as actions that attempt to adapt to stressful situations, and available resources to manage these.

Susan Krop Person Deltager
In the introduction the narrative of “Susan” has illustrated why it was not found sufficient to deal with the study objectives within one single epistemological approach. Consequently, quantitative and qualitative methodologies were combined; an approach that had implications for the overall design. * In order to describe health, socioeconomic status and use of health care on population level, we used registry data from 666 women, who had been operated for borderline tumours, ovarian cancer, and cancer of the fallopian tubes in 2007. As the intention was to describe the population at a specific period of time, a cross-sectional design was applied

Formål Metoder Materale Beskrive helbred,
socio-økonomisk status, og brug af sundhedsvæsenet Register studie Tværsnits design Deskriptiv statistik 666 kvinder (2007) Udforske levede erfaringer Interview studie Kvalitative forsknings interviews Tekst analyse 10 kvinder (2008-9) Udvikle et præoperativt forberedelsesprogram Design af program (2009) Undersøge helbred og mestring Test af det præoperative forberedelsesprogram Spørgeskemaundersøgelse Follow-up design Baseline målinger Test målinger (2010) 149 kvinder (2009) 145 kvinder ( 2010)

socio-økonomisk status, og brug af sundhedsvæsenet Register studie Tværsnits design Deskriptiv statistik 666 kvinder (2007) Udforske levede erfaringer Interview studie Kvalitative forsknings interviews Tekst analyse 10 kvinder (2008-9) Udvikle et præoperativt forberedelsesprogram Design af program (2009) Undersøge helbred og mestring Test af det præoperative forberedelsesprogram Spørgeskemaundersøgelse Follow-up design Baseline målinger Test målinger (2010) 149 kvinder (2009) 145 kvinder ( 2010) In order to explore the lived experiences of women, as they developed during their perioperative period a qualitative methodology was chosen in terms of semi-structured research interviews. Ten women were strategically included to represent the diversity of the population, concerning age, initial diagnosis and living conditions. * When information concerning health and living conditions, as well as the women’s lived experiences was provided, the supportive care intervention was designed. How this was done will be detailed later on Finally, in order to survey health and coping, a questionnaire study was made, using two previously validated questionnaires, As mentioned earlier, some of the participating women underwent surgery on the suspicion of ovarian cancer, others for verified. This circumstance did for both ethical and practical reasons not allow a blinded inclusion, and a follow-up study design was chosen. The survey consisted in baseline measurements during 2009 and test measurements in 10

socio-økonomisk status, og brug af sundhedsvæsenet Register studie Tværsnits design Deskriptiv statistik 666 kvinder (2007) Udforske levede erfaringer Interview studie Kvalitative forsknings interviews Tekst analyse 10 kvinder (2008-9) Udvikle et præoperativt forberedelsesprogram Design af program (2009) Undersøge helbred og mestring Test af det præoperative forberedelsesprogram Spørgeskemaundersøgelse Follow-up design Baseline målinger Test målinger (2010) 149 kvinder (2009) 145 kvinder ( 2010)

Det præoperative forberedelsesprogram - en kompleks intervention: (Campbell et al; BMJ 2000)
As the supportive care programme was considered to be a complex intervention, the design followed the sequential phases of developing complex interventions. Now comes a busy slight – please, focus on the highlighted areas. * In the first pre-clinical phase the quantitative results from the registry study were passed on to and used in the interview study. Subsequently – in Phase I - results and findings were used in the development of the supportive care programme. Having reached so far the initial test of the programme took place as an exploratory trial in phase two, which, according to the protocol, constituted the end of this study.

Register & Interview Studie

Præoperativt Forberedelses Program 28 Lene Seibæk

Test af program

Aarhus Universitets Hospital:
Setting Aarhus Universitets Hospital: center for kirurgisk behandling af kræft i æggestokkene Ambulatorium & sengeafdeling: samme personale The study was carried out at a centre for surgical treatment of gynaecological cancer at Aarhus University Hospital. In this centre the clinical pathway is organised so that the nursing staff and the surgeons follow each patient from the outpatient clinic to the ward and back again. * In the following the results will be presented in relation to the paper in which they were published. The material is comprehensive; A major emphasis will however be put on the patients’ experiences and the survey of health and coping during the perioperative period, as these areas represent less investigated fields in ovarian cancer surgery.

Introduktion Bagggrund Formål Metder Resultater Konklusioner Perspektiver Diskussion

Dansk Gynækologisk Cancer Database Danmarks Statistik
Artikel I Datakilder Dansk Gynækologisk Cancer Database Danmarks Statistik In paper I the population of women who were diagnosed with ovarian cancer was described terms of their health, living conditions and surgical treatment. * The majority proved to be elderly with moderate to severe illness and a tendency towards overweight The stage distribution confirmed existing knowledge, demonstrating that three out of four women received chemotherapy after the surgery Furthermore a high percentage of the women lived alone. An equal number of women had a lower level of education and the majority (75%) lived with a personal income below the Danish average, probably due to their sex and retired status.

Helbredsrelaterede og sociale karakteristika
Gennemsnits alder: 62.5 Moderat → svær sygdom: 61 % Moderat → svær overvægt: 43 % Borderline tumor + Stadium 1A: 25 % Kemoterapi (Stadium 1B-IV): 75 % Alene boende: 44 % Grundskole uddannelse: 42 % Indkomst ↓ gennemsnittet i DK: 75 % Pensionerede: 61 %

At være ny diagnosticeret At skulle i behandling
Artikel II Patient perspektiv: At være ny diagnosticeret At skulle i behandling To interviews per kvinde: Aftenen før OP 8 uger senere Tekst analyse In the second paper a patient perspective on being newly diagnosed, starting treatment was presented * Eeach woman was interviewed twice. The first interview took place in the hospital ward the evening before surgery. The second in the womens’ private homes eight weeks later; at that time they had either received their first chemotherapy or were about to finish their sick leave. The analysis was inspired by a phenomenological-hermeneutic text interpretation methodology. Through this the interview findings were systematically identified, put into meaning structures, and discussed.

Håbe det bedste og frygte det værste
Forebredelse som handling Forberedelse som interaktion Refleksioner og erfaringer The overall finding was that the diagnosis and start of treatment were life-events, in which personal existence was perceived to be threatened, although hope for a cure and will to live, were present. The findings provided an overall understanding of the complexity of challenges, and the personal development over time, of being a woman with ovarian cancer during her perioperative period. The analysis constituted the sub-themes: “Preparing as action”, “Preparing in interaction,” and “Reflections and experiences.”

Handling Praktiske forberedelser Fysiske forberedelser
Undertema Mønstre Empiriske fund Handling Praktiske forberedelser ” Jeg havde en uge til at fylde fryseren og vaske gardiner” ”Jeg har ligget i min seng hele tiden – jeg har ikke kunnet tage mig sammen til noget som helst” Fysiske forberedelser ”Jeg ryger for mange cigaretter og jeg har også taget et ekstra glas vin om aftenen for at kunne falde i søvn” ”Jeg spiser sundt og har erstattet teen med kærnemælk” Sygdomsfri zoner ”Så kan jeg lege for en stund at jeg ikke er syg” Opretholde en hverdag ”Jeg prøver at holde fast i hverdagen – også for familiens skyld” ”Den dag jeg fik at vide at jeg havde en virkeligt alvorlig kræftsygdom var en absolut milepæl” The first theme dealt with preparing for diagnosis and treatment. One significant activity was to make food and house ready for recovery periods. ” I had a week to cook for the freezer and wash my curtains.” However, women living in difficult social circumstances seemed not to be capable of preparing neither the house nor themselves ”I’ve been lying in my bed all the time. I couldn’t pull myself together” * The theme aslo held quite ambiguous descriptions of the life style during the wait: ”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk”

Undertema Mønstre Empiriske fund Handling Praktiske forberedelser ” Jeg havde en uge til at fylde fryseren og vaske gardiner” ”Jeg har ligget i min seng hele tiden – jeg har ikke kunnet tage mig sammen til nogenting” Fysiske forberedelser ”Jeg ryger for mange cigaretter og jeg har også taget et ekstra glas vin om aftenen for at kunne falde i søvn” ”Jeg spiser sundt og har erstattet teen med kærnemælk” Sygdomsfri zoner ”Så kan jeg lege for en stund at jeg ikke er syg” Opretholde en hverdag ”Jeg prøver at holde fast i hverdagen – også for familiens skyld” ”Den dag jeg fik at vide at jeg havde en virkeligt alvorlig kræftsygdom var en absolut milepæl” The first theme dealt with preparing for diagnosis and treatment. One significant activity was to make food and house ready for recovery periods. ” I had a week to cook for the freezer and wash my curtains.” However, women living in difficult social circumstances seemed not to be capable of preparing neither the house nor themselves ”I’ve been lying in my bed all the time. I couldn’t pull myself together” * The theme aslo held quite ambiguous descriptions of the life style during the wait: ”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk” 37 37

Forberedelse som interaktion
Undertema Mønstre Empiriske fund Forberedelse som interaktion Fortælle om sygdommen ”Det er en måde at blive klar på… At du hele tiden skal gentage at det skal ske” ”Vi bad dem venligst ikke distribuere nyheden om min kræftsygdom via Facebook og sms” Samarbejde med sundhedspersoner ”Det er lægevidenskaben i diaglog med mig – for det er altså min krop” ”Jeg var helt grå og mager da jeg blev indlagt, men i løbet af 24 timer var jeg kommet til hægterne” Familie relationer ”Jeg har en mand der drikker ; jeg kan ikke stole på ham, ikke en skid!” The second theme dealt with the women’s interaction. The women intuitively prepared themselves by preparing others. ”It’s a way of getting ready… that you keep repeating that it is going to happen”. This activity was heavily impacted by modern technologies: and mobile phones facilitated contact but could also create difficulties ”We kindly asked them not to distribute news of my cancer through Facebook” * In the interaction with the health care professionals it was of major importance to some to gain influence and control ”It’s medical science in dialogue with me… because it’s my body”. The women put a strong emphasis on the effect of basic care ”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered”

Undertema Mønstre Empiriske fund Forberedelse som interaktion Fortælle om sygdommen ”Det er en måde at blive klar på… At du hele tiden skal gentage at det skal ske” ”Vi bad dem venligst ikke distribuere nyheden om min kræftsygdom via Facebook og sms” Samarbejde med sundhedspersoner ”Det er lægevidenskaben i diaglog med mig – for det er altså min krop” ”Jeg var helt grå og mager da jeg blev indlagt, men i løbet af 24 timer var jeg kommet til hægterne” Familie relationer ”Jeg har en mand der drikker ; jeg kan ikke stole på ham, ikke en skid!” The second theme dealt with the women’s interaction. The women intuitively prepared themselves by preparing others. ”It’s a way of getting ready… that you keep repeating that it is going to happen”. This activity was heavily impacted by modern technologies: and mobile phones facilitated contact but could also create difficulties ”We kindly asked them not to distribute news of my cancer through Facebook” * In the interaction with the health care professionals it was of major importance to some to gain influence and control ”It’s medical science in dialogue with me… because it’s my body”. The women put a strong emphasis on the effect of basic care ”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered” 41 41

Undertema Mønstre Empiriske fund Forberedelse som interaktion Fortælle om sygdommen ”Det er en måde at blive klar på… At du hele tiden skal gentage at det skal ske” ”Vi bad dem venligst ikke distribuere nyheden om min kræftsygdom via Facebook og sms” Samarbejde med sundhedspersoner ”Det er lægevidenskaben i diaglog med mig – for det er altså min krop” ”Jeg var helt grå og mager da jeg blev indlagt, men i løbet af 24 timer var jeg kommet til hægterne” Familie relationer ”Jeg har en mand der drikker ; jeg kan ikke stole på ham, ikke en skid!” The second theme dealt with the women’s interaction. The women intuitively prepared themselves by preparing others. ”It’s a way of getting ready… that you keep repeating that it is going to happen”. This activity was heavily impacted by modern technologies: and mobile phones facilitated contact but could also create difficulties ”We kindly asked them not to distribute news of my cancer through Facebook” * In the interaction with the health care professionals it was of major importance to some to gain influence and control ”It’s medical science in dialogue with me… because it’s my body”. The women put a strong emphasis on the effect of basic care ”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered” 42 42

Refleksioner og erfaringer
Undertema Mønstre Empiriske fund Refleksioner og erfaringer Selvopfattelse ”Jeg synes selv at jeg er en relativt stærk person. Men jeg kan jo også være svag,ikke? Jeg mener: man er lige så sammensat som et kludetæppe” Liv og død ”Når du får sådan en sygdom, så er der pludselig sådan en matteret dør på din tidslinje – så kan du pludselig ikke se så langt” Livet under behandling ”Hvis du ikke får lov til at tro på de positive signaler du modtager fra din krop. Det er altså ikke godt – for det er jo der håbet skal komme fra – og optimismen også, ikke?” ”Kemoterapien går overraskende godt – med de småtterier der nu følger med. Men efter en uge har jeg det helt tip-top, og så har jeg fjorten rigtig gode dage”

Undertema Mønstre Empiriske fund Refleksioner og erfaringer Selvopfattelse ”Jeg synes selv at jeg er en relativt stærk person. Men jeg kan jo også være svag,ikke? Jeg mener: man er lige så sammensat som et kludetæppe” Liv og død ”Når du får sådan en sygdom, så er der pludselig sådan en matteret dør på din tidslinje – så kan du pludselig ikke se så langt” Livet under behandling ”Hvis du ikke får lov til at tro på de positive signaler du modtager fra din krop. Det er altså ikke godt – for det er jo der håbet skal komme fra – og optimismen også, ikke?” ”Kemoterapien går overraskende godt – med de småtterier der nu følger med. Efter en uge har jeg det helt tip-top, og så har jeg fjorten rigtig gode dage” 44 44

Undertema Mønstre Empiriske fund Refleksioner og erfaringer Selvopfattelse ”Jeg synes selv at jeg er en relativt stærk person. Men jeg kan jo også være svag,ikke? Jeg mener: man er lige så sammensat som et kludetæppe” Liv og død ”Når du får sådan en sygdom, så er der pludselig sådan en matteret dør på din tidslinje – så kan du pludselig ikke se så langt” Livet under behandling ”Hvis du ikke får lov til at tro på de positive signaler du modtager fra din krop. Det er altså ikke godt – for det er jo der håbet skal komme fra – og optimismen også, ikke?” ”Kemoterapien går overraskende godt – med de småtterier der nu følger med. Efter en uge har jeg det helt tip-top, og så har jeg fjorten rigtig gode dage” 45 45

Artkel III Sygesikringen Landspatientregistret Interview fund:
Data kilder Sygesikringen Landspatientregistret Interview fund: udvikling af symptomer In paper III the women’s symptom interpretation and health care seeking was studied by combining registry data on use of health care and hospital services with interview findings concerning individual experiences with symptom development. * The results showed that the women in total paid a very high amount of visits to primary health care, in particular to their General Practitioner. However, they seldom saw a specialist – only 5.4% had seen a gynaecologist prior to diagnosis.

Sundhedsydelser i primær sektor 666 kvinder →14.009 besøg
Artikel III Sundhedsydelser i primær sektor 666 kvinder → besøg Privat paktiserende læge: 66.5 % Gynækolog: 5.4 %

Kropsfornemmelse →→ Symptom →→ Lægesøgning
”jeg skulle købe mig et par ny lange bukser - så lagde jeg mærke til at den sædvanlige størrelse ikke passede mig” ”Jeg har en knude lige her – du kan selv mærke efter. Jeg gik straks til lægen – jeg var overbevist om at det var alvorligt” ” Det med min mave begyndte for mindst 3 måneder siden. Jeg talte med min svigerdatter om det. ”Tror du det er brok?” Vi blev enige om at det nok var noget i den retning” ”Og heldigvis stolede han på mig og henviste mig til sygehuset. I sådan en situation er det muligvis en fordel at være godt uddannet – og i en vis position, også”

Ovarian Cancer Surgery: during the Perioperative Period
Artikel IV Ovarian Cancer Surgery: Health and Coping during the Perioperative Period Submitted Deltagere: 294 Respons rate: 86 % (n: 252) In paper IV health and coping were investigated via questionnaires. A total of 294 women participated, with a response rate of 86%. * The women were consecutively allocated into three different study groups. The women filled out a SF-36 questionnaire on the ward the day before surgery. A version including SF-36 and a Coping questionnaire was sent to them eight weeks later. The women in the first study group went through the regular preoperative pathway. *Women in the second study group did all have ascites, a pelvic mass, and a RMI score exceeding 200. They went through the preoperative supportive care programme and constituted intervention measurements. * The women in the third study group had a RMI below 200; they received regular care, however in the same study setting as the intervention group, and they were therefore not considered to be regular controls.

Artikel IV Ovarian Cancer Surgery: Health and Coping during the Perioperative Period Submitted

Artikel Ovarian Cancer Surgery: Health and Coping during the Perioperative Period Submitted

Det præoperative forberedelsesprogram
The supportive care programme was developed and tested in collaboration with nurses from the study setting. The programme consisted in * specialist management of general health and comorbidity by a medical consultant * early physiotherapy * nutritional supplement and * symptom management. *An especially developed information booklet and DVD. This was * delivered in combination with nurse-led telephone follow-ups

Det præoperative forberedelsesprogram

Spørgeskema: Short Form 36
Valideret i Dansk sammenhæng Helbredsstatus for voksne individer Underområder: Fysisk funktionsniveau; begrænsninger grundet fysisk funktionsniveau; smerter; alment helbred; energi; socialt funktionsniveau; begrænsninger grundet socialt funktionsniveau; mentalt velvære. To hoved komponenter: fysisk og mentalt helbred Scores 0 → 100 To survey health during the perioperative period the Short Form 36 questionnaire was chosen. This questionnaire is validated in a Danish context. It estimates the self-assessed health status in adult individuals. * It is a 36-item questionnaire, where health status is defined within eight sub-areas: “physical functioning”, “limitations due to physical conditions”, “pain”, “general health”, “energy/tiredness”, “social functioning”, “limitations due to mental conditions”, and “mental wellbeing”. These sub-areas are merged into two main components describing the overall physical and mental health. The scores range from 0 to 100, with higher scores representing better health status.

Pre → post FYSISK komponent INDENFOR grupperne
Præoperativ Postoperativ Gennemsnitsforskel [95% CI] 2009 46.67 45.21 [-3.58 –0.67] 2010 + intervention 44.11 43.06 [-4.58 – 2.48] - intervention 49.99 46.03 -3.96 [-6.01 – -1.91]* This slight shows the change in physical health from the day before surgery to eight weeks later in the study groups. If you notice the red numbers you will see deterioration in the womens physical health during the perioperative period. However, the 2009 study group as well as the ”2010-no-intervention-group” stayed within standard levels for Danish women at similar age, which was The women, who went through the preoperative supportive care programme did not reach normal levels in physical health * This slight shows the change in mental health from the day before surgery to eight weeks later in all three study groups. If you once again notice the red numbers you will see increase in the womens mental health during the perioperative period, however, these are constantly below standards, also in women who had their cancer diagnosis refuted. It is worth noticing that the women, who went through the preoperative supportive care programme experienced further deterioration in their mental health Dansk Standard Niveau for kvinder i samme alder *= signifikant

Pre → post MENTAL komponent INDENFOR grupperne
Præoperativ Postoperativ Gennemsnitsforskel [ 95% CI] 2009 46.10 48.42 3.32 [0.68 – 5.95]* 2010 + intervention 47.22 46.79 [-5.30 – 4.45] - intervention 46.63 50.26 3.36 [0.50 – 6.76]* Dansk Standard Niveau for kvinder i samme alder : * = signifikant

PREOPERATIVE forskelle mellem studie grupperne * = significant
2009 – 2010 +intervention 2010 -intervention 2010 +intervention – 2010 –intervention Præoperativ Fysisk Gennemsnitlig forskel. 4.28 [0.54 – 8.02]* [ ,24]* 8.58 [ ]* Mental Gennemsnitlig forskel 1.13 [-2.96 – 5.22] [4.74 – 2.01] [-6.71 – 1.73] Signifikante forskelle i det præoperative fysiske helbred This slight shows the differences between the study groups. As you can se from the red numbers, significant differences were found before the surgery between the study groups in relation to physical health, however, this was not present in relation to mental health . * This slight illustrates that AFTER the surgery there were no significant differences between the study groups, neither in physical nor in mental health

POSTOPERATIVE forskelle mellem studiegrupperne
Ingen signifikante postoperative forskelle 2009 – 2010 +intervention 2010 -intervention 2010 +intervention – 2010 –intervention Postoperativ Fysisk Gennemsnitlig forskel 2.18 [-1.65 – 6,00] [-3.61 – 2,45] 2.76 [-6.56 – 1.04] Mental 2.24 [-2.16 – 6.65] { – 2.40] [-7.67 – 1.19]

”The life orientation questionnaire” (SOC)
Klare belasninger, finde løsninger, mobilisere ressourcer Gennemsnitsværdier 100 → 165 Valideret i en nordisk sammenhæng To survey the coping capacity the life orientation questionnaire was chosen. It evaluates inner preconditions for coping with difficult life situations, in terms of being able to manage tension, to find solutions, and to mobilise resources. It is a 29-item questionnaire, each of which contains seven possible answers, and has a range of the means from 100 to 165, higher scores representing better SOC. It is validated in a Nordic context and should only be used in combination with other questionnaires

Coping ved slutningen af den perioperative periode
Raske kvinder: 151 (Langius and Bjorvell, 1996) Studie gruppe Gennemsnit [ 95% CI] 2009 150 [ ] 2010 +intervention 152 [ ] 2010 –intervention 150 [ ] As illustrated by the red numbers, a coping capacity very close to normal levels was found in all three study groups eight weeks after the surgery * In the following the main conclusions and implications will be highlighted

Introduktion Bagggrund Formål Metder Resultater Konklusioner Perspektiver Diskussion

Hovedkonklusioner - 1 Ældre, systemisk sygdom, tendens til overvægt
Optimering af fysiske helbred (de maximalt syge) Støtte mentale helbred (alle) Basal pleje undersøtter velvære og håb Familien: en ressource og en belastning * The majority of women were elderly, with moderate systemic illness, and a tendency towards overweight. A need for optimising the physical health of the maximally ill prior to surgery was documented The nescecity of supporting the mental health in women undergoing ovarian cancer surgery was likewise demontrated . Basic care sustained wellbeing and hope. The family represented a unique resource, but the strains of having less supportive relations appeared to be insufficiently dealt with.

Hovedkonklusioner - 2 Symptom præsentation påvirker det diagnostiske forløb Levevilkår påvirker coping og lægesøgningsadfærd Kontinuerlig udvikling af supportive care, også indenfor electiv cancer kirurgi * The way the women presented their symptoms to the GP seemed crucial to the further diagnostic process. The general living conditions impacted coping and healthcare seeking. Continued development of supportive care interventions in elective cancer surgery seems most required

Der er stadig meget at undersøge…
Multi-center studie Håb og grundlæggende behov Information Relationer Symptom fortællinger og meget, meget mere In a multi-centre study, based on the clinical experiences and results from this study, major emphasis should be put on strengthening the mental health condition in all women, as well as the physical health of the maximally ill. * Any physical dimension of hope should be further studied within a humanistic health research paradigm Finding the appropriate timing and level of information is still a challenge in cancer care. Further knowledge might develop via focus-group interviews. Field studies of the interaction between the women, their relatives, and the healthcare professionals represent fields of further investigation. Finally studies dealing with narrative descriptions of symptoms and symptom clusters should be encouraged.

Hvad kan resultaterne bruges til i praksis?
Information - symptomer og sygdom Centralisering Multidisciplinære team (MDT) beslutninger Præoperativ optimering Balancen mellem det grundlæggende og det højt specialiserede Pårørende Rehabilitering og sundhedsfremme Kommunikationsmåder og midler Based on the results of this thesis it is suggested that: * Women at risk are informed of the early symptoms * Centralisation of the surgical treatment is fully implemented *Treatment decisions are based on multidisciplinary team discussions, that include the women’s personal preferences * Preoperative optimisation of the general health is further implemented - with special attention to comorbidity and late stage disease * Basic care and psychosocial support are provided during diagnostics and wait. *Family issues are addressed up front * Women, who are cured by the surgery, are offered rehabilitation

TAK til Økonomisk støtte Hovedvejleder Projekt vejledere
Det Sundhedsvidenskabelige Fakultet, Syddansk Universitet Gynækologisk – obstetrisk afdeling Y, Århus Universitetshospital, Skejby Region Midtjyllands Sundhedsvidenskabelige Forskningsfond Forskningspuljen, Århus Universitetshospital, Skejby Hede Nielsens Fond Kræftens Bekæmpelse, Komite for Psykosocial Kræftforskning Hovedvejleder Lise Hounsgaard, Lektor, cand. cur. ph.d. Enhed for Sygeplejeforskning, Det Sundhedsvidenskabelige Fakultet, Syddansk Universitet Projekt vejledere Lone Kjeld Petersen, Overlæge, dr.med. og Jan Blaakær, Professor, dr. med. Gynækologisk - Obstetrisk Afdeling, Aarhus Universitets Hospital Det præoperative forberedelsesprogram Mette Skadhauge, afdelingssygeplejerske Sine Fischer, Maiken Damgaard Petersen, Tina Lange, Tine Haubro, Anette Kier, sygeplejersker Gynækologisk - Obstetrisk Afdeling Y5, Aarhus Universitets Hospital The study was funded by generous grants for which I gratefully thank – without these it had not been possible to complete it. Moreover, the study was supervised by Lise Hounsgaard , Lone Kjeld Petersen and Jan Blaakær * Thank you very much for your attention.

Tak for opmærksomheden! Leneseib@rm.dk

Hvad kan resultaterne bruges til i praksis?
Information - symptomer og sygdom Centralisering Multidisciplinære team (MDT) beslutninger Præoperativ optimering Balancen mellem det grundlæggende og det højt specialiserede Pårørende Rehabilitering og sundhedsfremme Kommunikationsmåder og midler Hvad tænker I? Based on the results of this thesis it is suggested that: * Women at risk are informed of the early symptoms * Centralisation of the surgical treatment is fully implemented *Treatment decisions are based on multidisciplinary team discussions, that include the women’s personal preferences * Preoperative optimisation of the general health is further implemented - with special attention to comorbidity and late stage disease * Basic care and psychosocial support are provided during diagnostics and wait. *Family issues are addressed up front * Women, who are cured by the surgery, are offered rehabilitation

Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012

Lignende præsentationer

Præsentationer af emnet: "Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012"— Præsentationens transcript:

Lignende præsentationer

Om projektet

Feedback

Log ind

Logge ind via sociale netværk:

Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012

Lignende præsentationer

Præsentationer af emnet: "Lene Seibæk Forskningssygeplejerske, ph.d. 4. juni 2012"— Præsentationens transcript:

Lignende præsentationer

Om projektet

Feedback