Att vara närstående och vårdare till en person med livshotande cancersjukdom

The focus for this thesis has been significant others to patients with a life threatening cancer disease including patients enrolled in palliative homecare units and patients diagnosed with inoperable lung cancer. In today s more outpatient oriented health care context the significant others in these populations often become caregivers to their relatives with cancer. The studies in the thesis are mostly concerned with the interactions that occur between the significant other and the patient. The overall aim was to explore different aspects of significant others situation as caregivers in the process that arise when a close person has been diagnosed with at life threatening cancer disease. The first qualitative study aimed to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer. Two themes were generated from interviews with the significant others; one concerned the role transition into becoming a caregiver and the other the transition into a new life situation of the significant other. Significant others described themselves as bearing the primary responsibility for the care of the patient. They were found to have many concerns regarding communication of emotions about their own situation but seemed to have few expected sources of support in these concerns. Normally often the patient would have been the intimate confidant but in this situation normal communication patterns were disrupted. Professionals were expected to support primarily as consultants in direct care related tasks. In the second and third study dyadic assessment from significant others and patients were used to elevate significant others ability to identify and evaluate central problems and symptoms in persons with lung cancer, and in addition to investigate factors that may influence this ability. Results showed that the levels of agreement between significant others and patients assessments of the patients functions and symptoms were fair to good, but that significant others consistently rated the patients symptoms higher and functioning lower than the patients did. These discrepancies were most substantial in ratings of fatigue, emotional funcitoning, global health/quality of life. Factors found to influence agreement in those dimensions were, gender, patient age and significant others self-reported lack of family support, health problems and caregiver esteem. It was also found that emotional functioning and fatigue were the only significant predictors of the patients overall quality of life in both the patients and the significant others assessments. The fourth study was intiated to explore significant others relational functioning to a person with lung cancer and development in relational functioning during the first year after the patients diagnosis. In a sample of 91 significant others, data was collected on four occasions. Fifty-two percent of significant others reported change in relational functioning during disease trajectory. The most common change in relational functioning was either a linear change in a negative direction (49%) or a non-linear change with a temporary descending curve (26%), showing that change toward a more problematic relationship was most common. In this thesis it is concludes that communication and intimacy in the relationship between significant others and patients, particularly regarding emotional concerns, may have implications for the significant others transition into becoming a caregiver for a relative with a life threatening cancer disease

Factors influencing agreement in symptom ratings by lung cancer patients and their significant others

Comparisons of symptom ratings and health-related quality of life between significant others and patients have been the focus of numerous studies during the past decades. Additional studies are needed to assess the discrepancies identified in this work. In the present crosssectional exploratory study, focus has been on evaluating the accuracy of significant other proxy ratings and on investigating factors that influence agreement between lung cancer patients and significant others based on dyadic assessments from 52 patients and 54 significant others. Results indicate that the levels of agreement are fair to good, but that significant others consistently rate the patients’ symptoms higher and functioning lower than the patients do themselves. Factors found to influence agreement in various dimensions of symptoms and functioning were gender, patient age, and significant others’ self-reported lack of family support, health problems, and caregiver esteem

Experiences of positive encounters with healthcare professionals among women on long-term sickness absence due to breast cancer or due to other diagnoses : A nationwide survey

BACKGROUND: Experiences of encounters with professionals have been shown to influence return to work (RTW) among sickness absentees in general. The aim was to gain knowledge on experiences of encounters with healthcare professionals and the ability to RTW among women on long-term sickness absence (SA) due to breast cancer (BC) compared to among women on long-term SA due to other diagnoses. METHODS: Analyses of questionnaire data about experiences of encounters with healthcare professionals among 6197 women aged 19-65 years and on a SA spell lasting 4-8 months. Of those, 187 were on SA due to BC. Descriptive statistics and adjusted (for age, birth country, educational level, depressive symptoms) logistic regression analyses with 95% confidence intervals (CI) were conducted. RESULTS: About 95% in both groups of women stated that they had experienced positive encounters with healthcare, and a minority, about 20%, had experienced negative encounters. Four specific types of positive encounters had been experienced to a lesser extent by women with BC: "allowed me to take own responsibility" (odds ratio (OR) 0.6; 95% CI 0.4-0.8), "encouraged me to carry through my own solutions" (OR 0.5; 95% CI 0.4-0.7), "made reasonably high demands" (OR 0.6; 95% CI 0.4-0.9), and "sided with me/stood on my side" (OR 0.6; 95% CI 0.4-0.8). Among the women with BC, 46% stated that positive encounters promoted their ability to RTW compared to 56% among the others. CONCLUSION: Most of the women had experienced positive encounters and about half stated that positive encounters promoted their ability to RTW, although a slightly smaller proportion of the women with BC stated that. This study emphasizes that not only medical treatment but also encounters may influence the ability to RTW, something that is of clinical importance

Prostate-specific antigen (PSA) and distress : a cross-sectional nationwide survey in men with prostate cancer in Sweden

BACKGROUND: The prostate-specific antigen (PSA) -value is often used during the prostate cancer trajectory as a marker of progression or response to treatment. Concerns about PSA-values are often expressed by patients in clinical situations. Today there is a lack of larger studies that have investigated the association between PSA-value and distress. The aim was to investigate the association between PSA-values and distress adjusted for sociodemographic factors, hormonal therapy and quality of life (QoL), among men with prostate cancer. METHODS: In this cross-sectional survey of 3165 men with prostate cancer, members of the Swedish Prostate Cancer Federation, answered questions about sociodemographic factors, PSA, distress, QoL and treatments. Descriptive statistics, and bivariate and multivariable analyses were performed. The result was presented based on four PSA-value groups: 0-19, 20-99, 100-999, and ≥ 1000 ng/ml. RESULTS: Of the men, 53% experienced distress. An association between distress and PSA-values was found where higher PSA-values were associated with higher OR:s for experiencing distress in the different PSA-groups: 0-19 ng/ml (ref 1), 20-99 ng/ml (OR 1.25, 95% CI 1.01-1.55), 100-999 ng/ml (OR 1.47, 95% CI 1.12-1.94), ≥1000 ng/ml (OR 1.77, 95% CI 1.11-2.85). These associations were adjusted for sociodemographic factors and hormonal therapy. In the multivariable analyses, beside PSA-values, higher levels of distress were associated with being without partner or hormonal therapy. When adding QoL in the multivariable analysis, the association between PSA and distress did not remain significant. CONCLUSION: These results indicate that the PSA-values are associated with distress, especially for those with higher values. However, to be able to support these men, continued research is needed to gain more knowledge about the mechanisms behind the association between emotional distress and PSA-values

Factors of decisive importance for being in work or not during two years after breast cancer surgery : Content analysis of 462 women's open answers

BACKGROUND: Paid work is one of the most important aspects in life among working-aged women diagnosed with breast cancer. Despite several attempts, no previous study provides a comprehensive overview from the women's perspective about factors of importance for being able to work or not. Therefore, the aim of this study was to gain knowledge about factors that women themselves state are of decisive importance for being able to work or not during the first two years after breast cancer surgery. METHODS: Data was collected in a two-year follow-up questionnaire within the frame of a prospective cohort study of working-aged women who had undergone breast cancer surgery. 749 were included in the questionnaire study and of the 616 (82%) responding women, 462 (75%) wrote statements on an open-ended question about factors of decisive importance for being able to work or not work during the past two years. The statements were analyzed with content analysis. RESULTS: Five categories of factors of importance for being able to  work or not were identified, each covering several sub-categories: Health and wellbeing, Contacts and encounters, Flexibility and adjustment possibilities, Socioeconomic consequences from working/not working, and Own motivation and characteristics. A wide variety of factors were mentioned by the women and the findings give a multifaceted picture of many single but interrelated factors of decisive importance for being able to work/not work. The importance of flexibility in the return-to-work process was stressed, as well as the importance of supportive encounters from, e.g., colleagues, managers, as well as relatives. CONCLUSIONS: The results give a comprehensive overview over a variety of different types of factors for being able to return to/remain in work or to not work after breast cancer surgery, adding new knowledge about e.g. the importance of colleagues, and the women's own preferences or characteristics. These are factors that different stakeholders, both from healthcare but also from the work place and the insurance office, need to be aware of and collaborate around to support women with breast cancer during the period of treatment, rehabilitation and return to work

Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases : A matched, prospective study

OBJECTIVE: To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases. METHODS: From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT. RESULTS: The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes. SIGNIFICANCE OF RESULTS: The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment

Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data

BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death. METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death. RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006. CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life

Important factors associated with sick leave after allogeneic haematopoietic stem cell transplantation : A 1-year prospective study

PURPOSE: This study examines sick leave (SL) and factors associated with full-time SL 1 year after allogeneic haematopoietic stem cell transplantation (allo-HSCT) in patients of working age from 2009 to 2016 (n = 122). METHODS: Questionnaire data were collected on admission to the allo-HSCT unit, at 7 months and 1 year after allo-HSCT. Associations between factors and SL were analysed using logistic regression analyses. RESULTS: One year after allo-HSCT, 76% of participants were on SL, with 36% on full-time SL. In univariable analyses, chronic graft-versus-host-disease (cGvHD) (OR 3.07; 95% CI 1.34-7.07; p = 0.01), having symptoms of depression at 7 months (OR 4.81; 95% CI 1.69-13.69; p = 0.00) and low levels of vocational satisfaction at 7 months after treatment (OR 3.27; 95% CI 1.27-8.41; p = 0.01) were associated with full-time SL 1 year after allo-HSCT. cGvHD (OR 3.43; 95% CI 1.35-8.73; p = 0.01) and having symptoms of depression at 7 months after allo-HSCT (OR 3.37; 95% CI 1.2-11.58; p = 0.02) remained significant in multivariable analysis. CONCLUSION: The majority of allo-HSCT survivors were on SL 1 year after treatment, and cGvHD, low vocational satisfaction and depressive symptoms were associated with full-time SL 1 year after allo-HSCT. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals need to be observant of and manage the consequences of cGvHD and patients' symptoms of depression in order to support them appropriately in their return-to-work process

Symptoms and quality of life among men starting treatment for metastatic castration-resistant prostate cancer : a prospective multicenter study

BACKGROUND: Men with metastatic castration-resistant prostate cancer (mCRPC) have an incurable disease. Along with prolonging life, symptom management is one of the main goals with treatment. This is also important from a palliative care perspective where the life prolonging outcomes should be balanced with quality of life (QoL) in this late phase. It is also essential in symptom management to view different dimensions of symptoms, for example how severe or distressing symptoms are, to support best QoL. Therefore, more knowledge is needed about the symptom experience when these treatments are initiated and thus the aim of this study was to describe different dimensions of symptoms in men with mCRPC starting their first-line of life-prolonging treatment, and to describe the association between symptom burden and QoL. METHODS: Baseline data from a prospective longitudinal study of 143 men with mCRPC starting their first-line life-prolonging treatment were used. Symptoms were measured using the Memorial Symptom Assessment Scale (MSAS) and global QoL was measured by the EORTC QLQ C-30. Data was analyzed using descriptive- and multivariable linear regression analyses. RESULTS: On average, the men had more than 10 symptoms (range 0-31 of 33). 50% or more reported sweats, lack of energy, pain, problems with sexual activity and sexual desire. The symptoms they reported as most severe, or most distressing were not always the ones that were reported as most frequent. There was an association between QoL and physical symptoms, and also between QoL, and analgesic use and prostate-specific antigen (PSA) values. CONCLUSION: Even if some men with mCRPC report many symptoms, the dimensions of severity and distress levels vary, and the most frequent symptoms was not always the most burdensome or distressing. There was an association between high physical symptom burden and QoL, suggesting that it is not the number of symptoms that affects QoL but rather the subjective perceived impact of the physical symptoms experienced. The knowledge of how men with mCRPC experience and perceive their symptoms may help health care professionals in symptom management aiming to improve QoL, which is a cornerstone in integrating early palliative care