Oculomotor screening and neuro-visual rehabilitation following pediatric brain tumor resection.

Visual difficulties are common after brain tumors, despite a lack of visual complaints at diagnosis. These include difficulties with eye movements, visual coordination, vergence, accommodation, and photophobia, in addition to more obvious problems such as visual field defects.This case report presents the results of a thorough neuro-visual evaluation in a boy with sequelae after a brain tumor including intermittent double vision that was not explained by routine visual examination. Subjective complaints included poor reading perseverance, intermittent blurred and double vision, headache around the eyes when performing near activities, less efficient eye movement behavior in reading tasks, and increased sensitivity to visual motion. The patient participated in a multidisciplinary visual rehabilitation program that included reading glasses with prism compensation and tinted glasses, as well as training with the aim of improving eye teaming, near vision functions, and perseverance in eye movements.The patient responded quickly to the vision therapy program, with positive changes after just four weeks. Repeated neuro-visual evaluations over eight months showed remarkable improvements that were stable over time. This encouraging case report supports the notion that neuro-visual evaluation and rehabilitation should be included in the follow-up of patients after brain tumors.

Symptom clusters in palliative-stage cancer correlate with proinflammatory cytokine cluster.

BACKGROUND: Patients with palliative-stage cancer often suffer from a variety of debilitating symptoms which have been shown to appear in clusters. It is suggested that cytokines cause many such symptoms, and elevated cytokine production has been shown to correlate with symptoms. However, symptom clusters have not been thoroughly analyzed in relation to cytokine clusters. The aim of the present study was to identify symptom clusters and cytokine clusters in Swedish cancer patients, and to investigate correlations between the identified symptom clusters and cytokine clusters. METHODS: The EORTC Quality of Life Questionnaire Core 15 Palliative Care questionnaire was completed by 110 cancer patients, with blood samples taken at two time points four weeks apart. Meso scale discovery (MSD) assays were used to analyze 23 cytokines. Statistical analysis was performed using principal component analysis (PCA) of symptoms and cytokines, followed by correlation analysis of the obtained clusters. RESULTS: Three symptom clusters were identified: (I) pain-sleep disorder, (II) gastro-intestinal-fatigue, (III) physical functioning. The cytokines were divided into three clusters that can be characterized as (I) pro-tumorigenic, (II) cell-mediated immune response and (III) proinflammatory. At the second time point, a fourth cytokine cluster was isolated (IV) immunostimulation. Correlations were found at both time points between the proinflammatory cytokine cluster and the physical functioning symptom cluster, and at the week four time point between the proinflammatory cytokine cluster and the gastro-intestinal-fatigue symptom cluster. CONCLUSIONS: We show a correlation between symptom clusters and the proinflammatory cytokine cluster. Proinflammatory cytokines are known to cause symptoms that resemble palliative cancer symptoms. Increased knowledge of biochemical processes and their effect on patients' wellbeing may give clues for counteracting symptoms that affect quality of life (QOL) in palliative cancer care.

Nurses' experiences of suicide attempts in palliative care.

OBJECTIVES: To describe nurses' experiences of caring for individuals who have attempted suicide in specialized palliative care and to describe if the care of these individuals changed after the suicide attempt. METHODS: A qualitative, descriptive study was conducted. Nine nurses working in specialized palliative care units were interviewed following a semi-structured interview guide. Conventional content analysis was used in the analysis process. RESULTS: The results are presented in 3 categories: "A suicide attempt evokes strong emotions," "Health-care efforts changed after the suicide attempt," and "Experiences for the rest of working life." Suicide attempts aroused emotions in nurses such as frustration, compassion, and feelings of being manipulated. The relationship between the nurse and the individual was strengthened after the suicide attempt, and their conversations became deeper and changed in nature. Health-care efforts relating to the individual increased after the suicide attempt. SIGNIFICANCE OF RESULTS: The results of the study can create an awareness that the palliative process also includes the risk of suicide and can be used to create conditions for nurses to be able to handle questions about suicide without fear. The results of the study can be used as an "eye opener" to the fact that suicidality occurs in palliative care. In summary, there is a critical need for nursing education in suicide risk assessment and continued follow-up care for patients at risk of suicide within palliative care.

Multiprofessional Neurorehabilitation After COVID-19 Infection Should Include Assessment of Visual Function.

Objective: To report vision-related symptoms and neuro-visual clinical signs in patients approximately 4 months after discharge from hospitalization after COVID-19 infection. To report on coexisting functional and activity limitations. Design: The study is part of an ambidirectional population-based cohort study. Setting: An outpatient setting in a hospital environment. Participants: Patients from a population-based cohort study including all patients with laboratory-confirmed COVID-19 admitted to hospital during a 3-month period in a health care region in Sweden. Among patients who, based on a standardized telephone interview, were identified as having persisting rehabilitation needs 4 months after discharge (n=185), several (n=57) reported vision-related symptoms. All 57 patients were invited to a neuro-visual examination. Six patients declined, 6 were unavailable, and 3 did not fulfil the inclusion criteria. Thus, 42 patients were included in the analysis (N=42). Interventions: Not applicable. Main Outcome Measures: Vision-related symptoms, neuro-visual function, and coexisting impairments affecting activities of daily life and participation. Results: A total of 31% of patients with rehabilitation needs after COVID-19 reported vision-related symptoms. Reading-related issues (73.8%), blurry vision (69.0%), and light sensitivity (66.7%) were the most common symptoms. Patients with reading-related issues showed a higher level of eye strain (P<.001). Neuro-visual deficits were found in 83.3% of the patients, mainly concerning eye teaming (23.1%-66.7%) and eye movement (28.6%-30.8%) functions. Patients with vision-related symptoms reported fatigue and 18 other coexisting symptoms to a greater extent (P≤.0001 to .049). Conclusions: Neuro-visual symptoms and signs should be considered when assessing rehabilitation needs after COVID-19. The association between vision-related issues and coexisting symptoms with an effect on body function and activity and/or participation underlines the need for multiprofessional rehabilitation assessment and intervention.

Cultures that collide: an ethnographic study of the introduction of a palliative care consultation team on acute wards.

BACKGROUND: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. PURPOSE: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. METHODS: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. RESULTS: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. CONCLUSION: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.

Real-world cost-effectiveness of targeted therapy in metastatic renal cell carcinoma in Sweden: a population-based retrospective analysis.

OBJECTIVE: To explore cost-effectiveness of targeted therapies (TTs) in the treatment of metastatic renal cell carcinoma (mRCC) in a real-world context using a nationwide population-based approach. METHODS: Data on patients diagnosed with mRCC between 2002 and 2012 were extracted from Swedish national health data registers. To facilitate comparisons of patients diagnosed before and after TT introduction to the market, three cohorts were derived: pre-TT introduction (preTT), patients diagnosed 2002-2005; early TT introduction (TTi), patients diagnosed 2006-2008; and late TT introduction (TTii), which was limited to patients diagnosed 2009-2010 to ensure availability of total health care resource utilization (HCRU) data. Patients were followed until end of 2012. The value of TTs across cohorts was estimated using mean HCRU costs per life-year (LY) gained. Data on HCRU were obtained through national health registers for dispensed medication and inpatient and outpatient care, and the associated costs were estimated using the Lin method to account for censoring. LYs gained were defined as the difference in mean survival over the study period. RESULTS: The preTT, TTi, and TTii cohorts consisted of 1,366, 1,158, and 806 patients, respectively. Mean survival in years from mRCC diagnosis was 1.45 in the preTT cohort, 1.62 in the TTi cohort, and 1.83 in the TTii cohort. The respective mean total HCRU cost per patient over the study period was US$16,894, US$29,922, and US$30,037. The cost per LY gained per cohort was US$78,656 for TTi vs preTT, US$34,132 for TTii vs preTT, and US$523 for TTii vs TTi. CONCLUSION: Given common willingness-to-pay per LY gained thresholds, this study in a real-world population suggests the use of TTs in the Swedish mRCC population is increasingly cost-effective over time.

Overall survival in Swedish patients with renal cell carcinoma treated in the period 2002 to 2012: Update of the RENCOMP study with subgroup analysis of the synchronous metastatic and elderly populations.

BACKGROUND: This retrospective study investigated overall survival (OS) and factors influencing OS in Swedish patients with metastatic renal cell carcinoma (mRCC) during the pre- (2002-2005), early (2006-2008), and late (2009-2012) targeted therapy (TT) era. METHODS: Three national Swedish registries identified patients with mRCC. Median OS was estimated using the Kaplan-Meier method. Multivariate analysis was performed using Cox proportional hazards regression. Subgroup analysis was conducted for patients with synchronous metastases (M1) and the elderly (aged≥75y). RESULTS: A total of 4,217 patients with mRCC were identified, including 1,533 patients with M1 and 1,275 elderly patients. For patients with mRCC diagnosed in 2002 to 2005, 2006 to 2008, and 2009 to 2012, median OS was 10.0, 13.0, and 18.0 months. Similarly, median OS improved in the M1 and elderly populations. Elderly patients were less likely to be prescribed TT (≥75 vs.<75y): 18.3 vs. 63.5% (in 2006-2008) and 28.6% vs. 55.9% (in 2009-2012). Diagnosis of mRCC in 2009 to 2012, nephrectomy and TT prescription were associated with improved OS in the total mRCC, M1, and elderly populations. CONCLUSION: This real-world study showed continued significant improvement in mRCC OS during the late TT era, including in M1 and elderly populations. TT should be considered for all patients with mRCC based on tolerability, regardless of age.

Palliative care consultation team on acute wards-an intervention study with pre-post comparisons.

ᅟ: There is little evidence regarding primary healthcare team members' perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. PURPOSE: This study aimed to study whether a PCCT can influence and change primary healthcare team members' perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. METHODS: The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 year's intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. RESULTS: A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. CONCLUSION: It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.

Patients' sense of security during palliative care-what are the influencing factors?

CONTEXT: Having a sense of security is vitally important to patients who have a limited life expectancy. OBJECTIVES: We sought to identify the factors associated with patients' sense of security during the palliative care period. METHODS: We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link). RESULTS: Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model. CONCLUSION: These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.

Prolonged grievers: a qualitative evaluation of a support group intervention.

OBJECTIVE: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6-8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss. METHODS: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71. RESULTS: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover. SIGNIFICANCE OF RESULTS: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

Does a half-day course about palliative care matter? A quantitative and qualitative evaluation among health care practitioners.

BACKGROUND: To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals. OBJECTIVES: The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course. DESIGN: An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times. SETTING AND SUBJECTS: Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40). RESULTS: The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered. CONCLUSION: The course was appreciated and useful in the professionals' work, but it also created problems.

"A rewarding conclusion of the relationship": staff members' perspectives on providing bereavement follow-up.

GOALS OF WORK: Staff members in palliative home care play an important role in supporting bereaved family members. The aim of this study was to explore staff members' perspectives on providing such support. MATERIAL AND METHODS: Staff members in six units responded (n=120; response rate 58%) to a postal questionnaire with Likert-type and open-ended questions. The responses were analyzed using statistics and manifest content analysis. MAIN RESULTS: None of the respondents stated that bereavement follow-up was "most often difficult," 23% "most often rather difficult," 52.5% "most often rather easy," and 12.5% "most often easy." Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided. Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e., the staff members' needs for getting feedback on the care provided versus the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related, e.g., to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence, and to the staff member's relationship to the family member. CONCLUSIONS: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaning-based coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.

Family members' perceived needs for bereavement follow-up.

Palliative care does not end with the death of the patient, and many palliative care services offer specific follow-up services for the bereaved. The aims of this study were to quantitate perceived bereavement needs and to qualitatively describe these needs. The study design was cross-sectional and targeted family members three to nine months after the patient's death. Two hundred and forty-eight family members responded (response rate 66%) to a postal questionnaire with Likert-type and open-ended questions. The responses to the open-ended items were analyzed with manifest content analysis, and the quantitative part was analyzed with descriptive statistics. The analysis showed that about half of the family members expressed a need for bereavement follow-up. A majority favored a personal meeting, preferably in their own home, with the staff member who had had the most contact with the patient and the family. The family members wanted to talk about what had happened during the palliative phase (e.g., if the patient had suffered or not), and also about their present situation, their feelings of loneliness, and the future. The follow-up procedure made the family member experience a feeling of being recognized as a person with their own needs and was also valuable with regard to the family members' feelings of guilt. The findings are discussed in relation to narrative theory, meaning-based coping, and the dual process model of coping with bereavement, and designing follow-up procedures.

Next of kin's experience of powerlessness and helplessness in palliative home care.

GOALS OF WORK: Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications. PATIENTS AND METHODS: The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3-9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis. MAIN RESULTS: Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kin's perception of the patient's suffering, of the patient's fading away and the next of kin's own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness. CONCLUSIONS: The main findings provide tools for the practitioner to identify situations contributing to next of kin's sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans' search for action.