Perceived burden and need for support among caregivers of cancer patients.

BACKGROUND: The aims of this study were to examine (1) the perceived burden among caregivers and identify those in risk of high burden and (2) the need for support among caregivers and identify associated factors. MATERIALS AND METHODS: Cancer patients who participated in an educational program at the Montebello Center (MBC) in Norway between May 2021 and February 2022 were asked to invite a caregiver to answer a questionnaire. The caregiving burden was assessed with the Caregivers Reaction Assessment (CRA) that consists of 24 questions scored from 1 (strongly disagree) to 5 (strongly agree), covering five domains. A mean sum score was calculated for each domain. Higher subscale scores indicate higher levels of burden, except for caregiver esteem where a high score indicates a low burden. Need for support was assessed with 13 questions. RESULTS: Of 464 invitations, 185 caregivers responded (response 40%), median age was 58.0 years and 58% were male. Caregiver burden mean scores were: 2.6 (SD 1.03) for Impact on schedule, 2.1 (SD 0.79) for Lack of family support, 2.1 (SD 0.76) for Impact on health, 2.0 (SD 0.86) for Impact on finances, and 4.2 (SD 0.47) for Caregiver esteem. Female caregivers, younger, higher education, having comorbidities, caring for patients having recurrence of cancer, and shorter time since diagnosis were associated with higher burden measured on individual subscales of the CRA. Most reported needs were information about: cancer, late effects and rehabilitation services and support from peers and professionals to cope with the new situation. Younger, caregiver comorbidity and recurrence of cancer of the patient were associated with more needs. CONCLUSIONS: The results indicate that caregivers of cancer patients participating at the MBC report moderate caregiver burden, however, numerous caregivers reported need for support within several areas. Our findings need to be confirmed in a larger unselected group.

Health-Related Quality of Life, Fatigue, Level of Physical Activity, and Physical Capacity Before and After an Outpatient Rehabilitation Program for Women Within Working Age Treated for Breast Cancer.

The aims were to examine changes in patient-reported outcome measures (PROMs), level of physical activity (LPA), and physical capacity from before to after an outpatient rehabilitation program (ORP) for women with breast cancer (BC). Further aims were to explore the proportions of patients with clinically relevant improvements defined as ≥ 10% beneficial change in the scores of PROMs and variables associated with such improvements.A total of 270 women within working age (< 67 years) who recently (< 1.5 years) had completed primary therapy for BC with curative intent were included. The ORP consisted of seven weekly group sessions with patient education, group conversations, and PA. The patients completed questionnaires measuring health-related quality of life (HRQoL), fatigue and LPA before (T0), immediately after (T1), and 6 months after (T2) the program, and were physically tested at T0 and T1. The mean age of the patients was 50.4 years (SD 7.3) and the mean time since diagnosis was 10.6 months (SD 2.6). All patients had undergone surgery and 94% radiotherapy, and 96% had received chemotherapy and/or hormonal therapy.Physical-, role-, emotional-, cognitive-, and social function, global health, and fatigue significantly improved from T0 to T1. Physical-, role-, and cognitive function, and fatigue significantly improved from T1 to T2. LPA and physical capacity significantly improved from T0 to T1. More than 40% of the patients had a clinically relevant improvement in role-, social function, and fatigue symptoms, from T0 to T1. Low level of education was associated with an improvement in emotional function, and living alone was associated with an improvement in mental fatigue.HRQoL, fatigue, LPA, and physical capacity improved in women within working age recently treated for BC who participated in an ORP.

Thromboembolic events after high-intensity training during cisplatin-based chemotherapy for testicular cancer: Case reports and review of the literature.

The randomized "Testicular cancer and Aerobic and Strength Training trial" (TAST-trial) aimed to evaluate the effect of high-intensity interval training (HIIT) on cardiorespiratory fitness during cisplatin-based chemotherapy (CBCT) for testicular cancer (TC). Here, we report on an unexpected high number of thromboembolic (TE) events among patients randomized to the intervention arm, and on a review of the literature on TE events in TC patients undergoing CBCT. Patients aged 18 to 60 years with a diagnosis of metastatic germ cell TC, planned for 3 to 4 CBCT cycles, were randomized to a 9 to 12 weeks exercise intervention, or to a single lifestyle counseling session. The exercise intervention included two weekly HIIT sessions, each with 2 to 4 intervals of 2 to 4 minutes at 85% to 95% of peak heart rate. The study was prematurely discontinued after inclusion of 19 of the planned 94 patients, with nine patients randomized to the intervention arm and 10 to the control arm. Three patients in the intervention arm developed TE complications; two with pulmonary embolism and one with myocardial infarction. All three patients had clinical stage IIA TC. No TE complications were observed among patients in the control arm. Our observations indicate that high-intensity aerobic training during CBCT might increase the risk of TE events in TC patients, leading to premature closure of the TAST-trial.

Changes in fatigue, health-related quality of life and physical activity after a one-week educational program for cancer survivors.

Background: Rehabilitation aims to improve function, but the effects of different programs are not clear. The aims of the present study were to: (1) compare the level of fatigue and health-related quality of life (HRQOL) of cancer survivors admitted to a one-week inpatient educational program (IEP) to the general population (NORMS), (2) examine changes in fatigue, HRQOL and physical activity after the IEP and (3) examine the proportions of survivors for female and male separately with clinically relevant improvement (>10% of maximum scale). Methods: Cancer survivors ≥18 years, diagnosed with breast-, prostate- or gastrointestinal cancer within the last 10 years, about to attend a one-week IEP were invited to an observational study with a pre-post design. The IEP included lectures, group discussions and physical activity. The participants completed a questionnaire on the arrival day (T0) and three months after the stay (T1). Fatigue was assessed by the Fatigue Questionnaire and HRQOL by Short Form-36. Results: Compared to NORMS, both female and male participants had significantly higher mean levels of fatigue and poorer HRQOL at T0 and T1. From T0 to T1, among all participants physical fatigue was reduced from 12.6 (SD 3.9) to 11.8 (SD 3.8; p < .001), mental fatigue from 6.3 (SD 2.2) to 6.0 (SD 2.2; p = .044) and total fatigue from 19.0 (SD 5.3) to 17.8 (SD 5.4; p = .001). Among female participants, 30% experienced clinically relevant improvement in physical fatigue, 28% in total fatigue and 36% in general health. Of male participants, 31% displayed a clinically relevant improvement in role limitations physical. Conclusion: Participants in the IEP reduced their levels of fatigue and improved aspects of HRQOL, more often observed among female participants than among males. Because of the lack of a control group it is not possible to conclude whether the changes were due to the IEP.

Gender differences in health status and benefits of a one-week educational programme for caregivers of cancer patients.

OBJECTIVE: The aims of this study were to investigate differences between female and male caregivers' health status before and 3 months after a one-week educational programme, self-reported needs for support and changes in health status over time. METHODS: Caregivers were partners of cancer patients aged ≥18 years who participated in the programme. Questionnaires were completed at baseline and 3 months after the programme. RESULTS: At baseline, 167 caregivers completed the questionnaire, 55% were females and the mean age 60.2 years (range 31-79). Female caregivers reported poorer vitality (p = 0.016) and more chronic fatigue compared to male caregivers (28% vs. 13%, p = 0.036). Females more frequently reported need for support: psychological counselling (21% vs. 3%, p = 0.001), group conversations (51% vs. 28%, p = 0.003), nutritional counselling (39% vs. 17%, p = 0.002) and recreational stay (46% vs. 24%, p = 0.004). Significant benefits within-group changes were observed among female caregivers in role physical, general health, vitality, social functioning, mental and total fatigue, whereas no significant within-group changes were observed for males. However, in adjusted analyses no significantly between-group gender differences in mean changes were observed. CONCLUSION: More studies are needed to better understand the differences and possible effects of programmes among female and male caregivers in order to develop relevant support.

Perceived needs for different components in a rehabilitation program among cancer survivors with chronic fatigue compared to survivors without chronic fatigue.

BACKGROUND: Knowledge about the user' needs is important to develop targeted rehabilitation for cancer patients with chronic fatigue (CF). The aims of the study were to examine prevalence of CF in cancer survivors attending an one-week inpatient educational program (IEP) and to identify characteristics of those with CF. Further to examine the perceived needs for different components in a rehabilitation program, need of complex rehabilitation (at least two components) and aspects of health-related quality of life (HRQoL) among survivors with CF versus those without CF. MATERIAL AND METHODS: Cancer survivors ≥18 years, diagnosed with different types of cancer within the last 10 years and attending a one-week IEP were invited to this cross-sectional study. CF was assessed by the Fatigue Questionnaire, perceived needs by asking a question about needs for different components in a rehabilitation program and HRQoL was assessed by The Medical Outcomes Study Short Form 36. RESULTS: Of 564 participants, 45% reported CF. Breast cancer, mixed cancer types (including small groups with different cancer types) and comorbidities increased the risk for having CF. Compared to participants without CF, the participants with CF reported more frequently need for physical training (86% vs. 65%, p < 0.001), physiotherapy (71% vs. 55%, p < 0.001) and nutrition counseling (68% vs. 53%, p = 0.001). Among participants with CF, 75% reported need for three or more components whereas 54% reported need for the same number of components among those without CF (p < 0.001). CONCLUSION: Almost half of the cancer survivors attending the IEP had CF. Physical training, physiotherapy and nutrition counseling were the most frequently reported needs and significantly more often observed in participants with CF than without CF. A higher percentage of those with CF reported need for a complex rehabilitation compared to those without CF. More research is necessary to obtain more knowledge to further make targeted programs to better match cancer survivors' needs.

Lifestyles of cancer survivors attending an inpatient educational program-a cross-sectional study.

PURPOSE: Cancer survivors have increased risk for adverse health effects, but the risk can be reduced by adopting a healthy lifestyle. Knowledge of lifestyle in terms of physical activity (PA), diet (intake of fruit and vegetables [F&V]) and smoking behaviors of cancer survivors enrolled in an inpatient educational program and identification of subgroups not meeting the lifestyle guidelines are needed to set up more targeted programs. METHODS: We invited 862 cancer survivors, ≥18 years, diagnosed within the last 10 years and about to attend a 1-week educational program, to participate in this cross-sectional study. Sixty-seven percent (n = 576) returned the questionnaire before the start of the program. PA, F&V intake (5-A-Day) and smoking behaviors were self-reported. Logistic regression analyses were used to identify the characteristics of those not meeting the guidelines. RESULTS: Sixty-three percent were women, median age was 60 years (range 28-83), 52 % had high education and median time since diagnosis was 12 months (range 2-119). Fifty-five percent did not meet the PA guidelines, 81 % did not meet the 5-A-Day guidelines and 12 % were current smokers. In multivariate analyses, age ≥60 years and low education were associated with not meeting the PA guidelines, and male gender and low education were associated with not meeting the 5-A-Day guidelines. Living alone was associated with smoking. CONCLUSIONS: The majority of cancer survivors attending an educational program do not meet the public guidelines for PA and diet. Special attention should be given to those who are male, over age 60 years and with low education.

How do survivors after out-of-hospital cardiac arrest perceive their health compared to the norm population? A nationwide registry study from Norway.

Introduction: Self-perceived health status data is usually collected using patient-reported outcome measures. Information from the patients' perspective is one of the important components in planning person-centred care. The study aimed to compare EQ-5D-5L in survivors after out-of-hospital cardiac arrest (OHCA) with data for Norwegian population controls. Secondary aim included comparing characteristics of respondents and non-respondents from the OHCA population. Methods: In this cross-sectional survey, 714 OHCA survivors received an electronic EQ-5D-5L questionnaire 3-6 months following OHCA. EQ-5D-5L assesses for five dimensions of health (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) with five-point descriptive scales and overall health on a visual analogue scale from 0 (worst) to 100 (best) (EQ VAS). Results are used to calculate the EQ index ranging from -0.59 (worst) to 1 (best). Patient responses were matched for age and sex with existing data from controls, collected through a postal survey (response rate 26%), and compared with Chi-square tests or t-tests as appropriate. Results: Of 784 OHCA survivors, 714 received the EQ-5D-5L, and 445 (62%) responded. Respondents had higher rates of shockable first rhythm and better cerebral performance category scores than the non-respondents. OHCA survivors reported poorer health compared to controls as assessed by EQ-5D-5L dimensions, the EQ index (0.76 ± 0.24 vs 0.82 ± 0.18), and EQ VAS (69 ± 21 vs 79 ± 17), except for the pain/discomfort dimension. Conclusions: Norwegian OHCA survivors reported poorer health than the general population as assessed by the EQ-5D-5L. PROMs use in this population can be used to inform follow-up and health care delivery.

Cancer patients' needs for rehabilitation services.

PURPOSE: To examine cancer patients' needs for rehabilitation services and factors associated with such needs, and secondly identify unmet needs for rehabilitation services and related factors. MATERIAL AND METHODS: In 2008 persons aged 25-60 years, diagnosed in 2005/2006 with the ten most prevalent cancers in Norway were identified through the Cancer Registry of Norway. These patients were contacted by their treating hospital receiving a mailed questionnaire. Main outcomes for the present study were measured by two questions assessing a) needs for rehabilitation services and b) rehabilitation services offered/used. For each question seven services were listed; physical therapy, physical training, psychological counseling, consultations with social worker, occupational therapy, supportive group sessions and admittance to a convalescent home. The respondents then rated to what extent they had experienced needs and if they had been offered and used each service. Those who reported need for a service that not had been offered were defined as having unmet need. Associations between demographic, health-related and outcome variables were analyzed by multivariate logistic and linear regression analyses. RESULTS: Among the 1 325 respondents, the mean age was 52 years and 70% were women. Sixty-three percent reported need for at least one rehabilitation service. Need for physical therapy was most frequently reported (43%), followed by physical training (34%), psychological counseling (27%), supportive group sessions (24%), admittance to a convalescent home (24%), consultation with social worker (19%) and occupational therapy (6%). Changes in employment status and ongoing or previous chemotherapy were associated with reporting needs for all rehabilitation services. Forty percent reported unmet needs, which most frequently was reported among persons living alone, who had changed their employment status, receiving or had received chemotherapy or reported comorbidities. CONCLUSIONS: The majority reported need for at least one rehabilitation service, and 40% reported unmet needs. Prospective studies are recommended in order to better understand needs for rehabilitation services, such as needs in relation to time since treatment, extent of disease and treatment intensity.

Feasibility of a physical activity intervention during and shortly after chemotherapy for testicular cancer.

BACKGROUND: Given the risk of developing acute and long-term adverse effects in patients receiving cisplatin-based chemotherapy for testicular cancer (TC), risk-reducing interventions, such as physical activity (PA), may be relevant. Limited knowledge is available on the challenges met when conducting PA intervention trials in patients with TC during and shortly after chemotherapy. The aims of the present feasibility study are therefore to determine patient recruitment, compliance and adherence to a PA intervention. RESULTS: Patients with metastatic TC referred to cisplatin-based chemotherapy were eligible. They followed an individual low-threshold PA intervention, including counseling from a personal coach during and 3 months after chemotherapy. Outcomes were recruitment rate, compliance rate and adherence to the intervention including preferences for type of PA and barriers for PA. During 8 months 12 of 18 eligible patients were invited, all consented, but three dropped out. Walking and low intensity activities were preferred and nausea and feeling unwell were the most often reported barriers towards PA. DISCUSSION: In order to achieve adequate recruitment, compliance and complete data in future PA intervention trials, close cooperation with treating physicians, individual PA plans and availability of personalized coaching are required. Trial registration NCT01749774, November 2012, ClinicalTrials.gov.