BACKGROUND: The study aims to determine possible dose-volume response relationships between the rectum, sigmoid colon and small intestine and the 'excessive mucus discharge' syndrome after pelvic radiotherapy for gynaecological cancer.

METHODS AND MATERIALS: From a larger cohort, 98 gynaecological cancer survivors were included in this study. These survivors, who were followed for 2 to 14 years, received external beam radiation therapy but not brachytherapy and not did not have stoma. Thirteen of the 98 developed excessive mucus discharge syndrome. Three self-assessed symptoms were weighted together to produce a score interpreted as 'excessive mucus discharge' syndrome based on the factor loadings from factor analysis. The dose-volume histograms (DVHs) for rectum, sigmoid colon, small intestine for each survivor were exported from the treatment planning systems. The dose-volume response relationships for excessive mucus discharge and each organ at risk were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

RESULTS: The small intestine was found to have steep dose-response curves, having estimated dose-response parameters: γ50: 1.28, 1.23, 1.32, D50: 61.6, 63.1, 60.2 for Probit, RS and LKB respectively. The sigmoid colon (AUC: 0.68) and the small intestine (AUC: 0.65) had the highest AUC values. For the small intestine, the DVHs for survivors with and without excessive mucus discharge were well separated for low to intermediate doses; this was not true for the sigmoid colon. Based on all results, we interpret the results for the small intestine to reflect a relevant link.

CONCLUSION: An association was found between the mean dose to the small intestine and the occurrence of 'excessive mucus discharge'. When trying to reduce and even eliminate the incidence of 'excessive mucus discharge', it would be useful and important to separately delineate the small intestine and implement the dose-response estimations reported in the study.

PURPOSE: To find out what organs and doses are most relevant for 'radiation-induced urgency syndrome' in order to derive the corresponding dose-response relationships as an aid for avoiding the syndrome in the future.

MATERIAL AND METHODS: From a larger group of gynecological cancer survivors followed-up 2-14 years, we identified 98 whom had undergone external beam radiation therapy but not brachytherapy and not having a stoma. Of those survivors, 24 developed urgency syndrome. Based on the loading factor from a factor analysis, and symptom frequency, 15 symptoms were weighted together to a score interpreted as the intensity of radiation-induced urgency symptom. On reactivated dose plans, we contoured the small intestine, sigmoid colon and the rectum (separate from the anal-sphincter region) and we exported the dose-volume histograms for each survivor. Dose-response relationships from respective risk organ and urgency syndrome were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

RESULTS: The rectum and sigmoid colon have steep dose-response relationships for urgency syndrome for Probit, RS and LKB. The dose-response parameters for the rectum were D_50: 51.3, 51.4, and 51.3 Gy, γ₅₀ = 1.19 for all models, s was 7.0e^-09 for RS and n was 9.9 × 10⁷ for LKB. For Sigmoid colon, D₅₀ were 51.6, 51.6, and 51.5 Gy, γ₅₀ were 1.20, 1.25, and 1.27, s was 2.8 for RS and n was 0.079 for LKB.

CONCLUSIONS: Primarily the dose to sigmoid colon as well as the rectum is related to urgency syndrome among gynecological cancer survivors. Separate delineation of the rectum and sigmoid colon in order to incorporate the dose-response results may aid in reduction of the incidence of the urgency syndrome.

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

PURPOSE: The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer.

METHODS: This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer.

RESULTS: The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p < 0.01) for the overall preparedness question and 0.37 (p < 0.01) for overall well-being.

CONCLUSION: The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness.

Prostate cancer is the most common form of cancer amongst men in both Sweden and Europe. Once the disease has metastasised, and is no longer sensitive to hormonal (castration) therapy, it is considered incurable. However, since a few years back men at this stage of the disease have the opportunity to undergo different life-prolonging treatments. The knowledge about the effect of these treatments on different patient-reported outcome measures is very limited. Thus, the aim of this study was to, based on men’s experiences of living with, and undergoing life-prolonging treatment of, metastatic castration-resistant prostate cancer (mCRPC), identify issues and matters of importance and significance to this group. The study also includes an evaluation of a questionnaire intended for use in a larger prospective research project including men in the corresponding situation.

The study was conducted with qualitative design. Data was collected through nine interviews; five were semistructured and four were carried out with think-aloud methodology. The content of the interviews revolved around the questionnaire, as well as the participants’ situation living with and undergoing treatment of mCRPC. Data was analysed using qualitative content analysis. In conclusion, the result indicates that living with and undergoing life-prolonging treatment of mCRPC could mean living in a world of uncertainty and change. This could be manifested in various ways, with physical, psychological, emotional, social and existential consequences. Information, knowledge and participation in decision-making appeared to be of importance. The complexity of these men’s situations puts demands on health care, where a holistic view of the patient, continuity and trust were described as essential. The result was applied in the completion of the research project questionnaire.

The study was carried out with financial support from Sophiahemmet reseach fundings and County council of Sörmland.

Prostate cancer is the most common form of cancer amongst men in both Sweden and Europe. Once the disease has metastasised, and is no longer sensitive to hormonal (castration) therapy, it is considered incurable. However, since a few years back men at this stage of the disease have the opportunity to undergo different life-prolonging treatments. The knowledge about the effect of these treatments on different patient-reported outcome measures is very limited. Thus, the aim of this study was to, based on men’s experiences of living with, and undergoing life-prolonging treatment of, metastatic castration-resistant prostate cancer (mCRPC), identify issues and matters of importance and significance to this group. The study also includes an evaluation of a questionnaire intended for use in a larger prospective research project including men in the corresponding situation. The study was conducted with qualitative design. Data was collected through nine interviews; five were semistructured and four were carried out with think-aloud methodology. The content of the interviews revolved around the questionnaire, as well as the participants’ situation living with and undergoing treatment of mCRPC. Data was analysed using qualitative content analysis. In conclusion, the result indicates that living with and undergoing life-prolonging treatment of mCRPC could mean living in a world of uncertainty and change. This could be manifested in various ways, with physical, psychological, emotional, social and existential consequences. Information, knowledge and participation in decision-making appeared to be of importance. The complexity of these men’s situations puts demands on health care, where a holistic view of the patient, continuity and trust were described as essential. The result was applied in the completion of the research project questionnaire.

The study was carried out with financial support from Sophiahemmet reseach fundings and County council of Sörmland.

Background/Objectives: Siblings face many challenges and the aim of this paper is to explore bereaved siblings’ memories and experiences of their brother's or sister's illness and death.

Design/Methods: In this nationwide Swedish study 174 of 240 (73 %) bereaved siblings participated and 70 % responded to two open‐ended questions on siblings’ positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

Results: The bereaved siblings’ responses were categorized into four different themes: endurance vs. vulnerability; family cohesion vs. family conflicts; growth vs. stagnation; professional support vs. lack of professional support. Endurance was expressed as the influence that the ill siblings’ willpower, good mood and stamina had on the healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness. Family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme, most siblings perceived support by physicians and staff at the hospital as being warm, kind and honest, while some siblings had negative experiences.

Conclusions: Our study shows that bereaved siblings can have positive memories and experiences, even though the death of a sibling is a distressing situation. The significance of the positive buffering effect on the bereaved siblings’ own endurance, personal growth, family cohesion and social support should be noted. The knowledge acquired by listening to the voices of bereaved siblings can be valuable in showing healthcare professionals the importance of supporting siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

BACKGROUND: Research and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.

METHODS: A mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.

RESULTS: Our findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.

CONCLUSIONS: Despite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual's specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.

Purpose: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life.

Method: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method.

Results: The results showed that five themes were important for the men’s experiences of their bodily alterations throughout the course of the illness: "something is ’wrong’", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details" Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients’ minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives.

Conclusion: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level. © 2011 Elsevier Ltd.

A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

BACKGROUND: Despite the experimental evidence that certain dietary compounds lower the risk of radiation-induced damage to the intestine, clinical data are missing and dietary advice to irradiated patients is not evidence-based.

MATERIALS AND METHODS: We have previously identified 28 intestinal health-related symptoms among 623 gynaecological-cancer survivors (three to fifteen years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five radiation-induced survivorship syndromes: defecation-urgency syndrome, fecal-leakage syndrome, excessive mucus discharge, excessive gas discharge and blood discharge. The grouping was based on factor scores produced by Exploratory Factor Analysis in combination with the Variable Cutoff Method. Frequency of food intake was measured by a questionnaire. We evaluated the relationship between dietary intake and the intensity of the five syndromes.

RESULTS: With the exception of excessive mucus discharge, the intensity of all syndromes declined with increasing intake of citrus fruits. The intensity of defecation-urgency and fecal-leakage syndrome declined with combined intake of vegetables and citrus fruits. The intensity of excessive mucus discharge was increased with increasing intake of gluten.

CONCLUSION: In this observational study, we found an association between a high intake of citrus fruits and vegetables and a lower intensity of the studied radiation-induced cancer survivorship syndromes. Our data suggest it may be worthwhile to continue to search for a role of the diet before, during and after radiotherapy to help the cancer survivor restore her or his intestinal health after irradiation.

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; &lt; 6 months, 6-18 months and &gt; 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 &lt; 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.

Background

Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.

Methods

This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.

Results

This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.

Conclusions

People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.

Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm-indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients-although methylphenidate and corticosteroids might be considered.

Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm—indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients—although methylphenidate and corticosteroids might be considered.

Background

Performing clinical trials in palliative cancer care is known to be challenging.

Objective

This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo- controlled trial while receiving palliative cancer care at end of life.

Method

A descriptive design with a qualitative approach was used. 14 patients who had participated in the ‘Palliative- D’ study were interviewed. Data were analysed using content analysis.

Results

Three categories were identified understanding the study design, willingness to participate and collaboration with the research team alongside standard care. Being randomised, with the risk of receiving placebo, was perceived as non- problematic since it was understood as being important for the quality of the research. Patients showed a willingness to participate for the sake of others and also for their own sake, hoping for a cure or at least to live as long as possible. Patients felt proud of being useful and contributing to research. Consent to participate was made autonomously without discussing with others. Patients considered the study design uncomplicated and well- integrated into the standard care.

Conclusion

Study participation in a randomised, placebo- controlled trial can be a positive and meaningful experience for patients despite advanced cancer in end of life. Participation may support patients’ autonomy and give hope, and therefore, might have a positive effect on quality of life. A carefully planned and simple study design, well integrated into standard care, can facilitate the feasibility of clinical studies in specialised palliative home care.

OBJECTIVE: Signs and symptoms are important in monitoring prostate cancer, but there is a lack of understanding about the men's interpretation of signs and symptoms in relation to disease progression in advanced phases of the disease. The aim was to illuminate the experience of signs and symptoms in relation to disease progression in men with metastatic castration-resistant prostate cancer (mCRPC).

METHOD: Thirty longitudinal interviews were conducted with 11 men undergoing life-prolonging treatment for mCRPC. Conventional content analysis was used.

RESULTS: The results illuminate an uncertainty that the men experience when interpreting signs and symptoms. The overarching theme was The experience of an uncertain illness situation within the framework of progression, with four subthemes: Symptoms triggering thoughts about disease progression; Making sense of signs, also in the absence of symptoms; Making sense of symptoms during treatment; Progression triggering thoughts about the remainder of life.

CONCLUSION: In the uncertain illness situation, the men strive to make sense of signs and symptoms based on previous experiences and in relation to disease progression. Understanding the men's perspectives on signs and symptoms in this late phase may help health care professionals communicate about disease progression considering the balance between treatment outcome and quality of life.

BACKGROUND: It is unknown whether smoking; age at time of radiotherapy or time since radiotherapy influence the intensity of late radiation-induced bowel syndromes.

MATERIAL AND METHODS: We have previously identified 28 symptoms decreasing bowel health among 623 gynecological-cancer survivors (three to twelve years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five separate late bowel syndromes through factor analysis. Here, we related possible predictors of bowel health to syndrome intensity, by combining factor analysis weights and symptom frequency on a person-incidence scale.

RESULTS: A strong (p < .001) association between smoking and radiation-induced urgency syndrome was found with a syndrome intensity (normalized factor score) of 0.4 (never smoker), 1.2 (former smoker) and 2.5 (current smoker). Excessive gas discharge was also related to smoking (p = .001). Younger age at treatment resulted in a higher intensity, except for the leakage syndrome. For the urgency syndrome, intensity decreased with time since treatment.

CONCLUSIONS: Smoking aggravates the radiation-induced urgency syndrome and excessive gas discharge syndrome. Smoking cessation may promote bowel health among gynecological-cancer survivors. Furthermore, by understanding the mechanism for the decline in urgency-syndrome intensity over time, we may identify new strategies for prevention and alleviation.

Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative care should be available to children and adults. Yet communication and prognostic disclosure may influence the timing of involvement in palliative care.

Purpose: To investigate whether parents perceived that their child receivedpalliative care and to what extent that contrasted parents’ perceptions of their child’s care and symptoms in the last month of life.

Methods: A nationwide population-based parental questionnaire study in Sweden, one to five years after their child’s death (n=226). Descriptive statistics were used.

Results: A majority of parents (70%) reported that they were aware that their child received palliative care and they were informed about the incurable disease (57%) within 3 months before the child died. The most common diagnosis among children receiving palliative care was a brain tumor (45%) with a disease related death (90%) andthecarewasoftenreceivedat home(44%).Basedonthereports of parents who felt that their child did not receive palliative care, 45% were informed within days or hours about the child’s incurable disease, 45% of these children were diagnosed with leukemia, 60% died at the intensive care unit, and 49% died of treatment-related complications. It was most common for families who lived in urban areas (28%) to report their child received palliative care, in comparison to families living in sparsely populated areas (11%). A significant proportion of parents whose child received palliative care (96%) stated that the healthcare professionals were competent in caring for their child, for those who reported no palliative care it was slightly lower (74%). In both groups many children were affected by multiple symptoms the last month of life.

Conclusions: The study findings highlight the role of understanding parental perceptions of pediatric palliative oncology care, the role of initiating palliative care early, the need of access to national equitable PC and professional competence across the lifespan, regardless of diagnosis and place of residence.

[Palliative care in paediatric oncology - a national parental perspective]

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.