The Role of Long-Term Physical Activity in Relation to Cancer-Related Health Outcomes: A 12-Month Follow-up of the Phys-Can RCT

Purpose: While moderate-to-vigorous intensity physical activity (MVPA) is associated with various health improvements shortly after completion of exercise interventions, it remains unclear which health benefits can be expected when MVPA levels are maintained in the long term in cancer survivors. We aimed to assess the associations of (1) MVPA level at 12-month follow-up and (2) long-term MVPA patterns (from immediately post-intervention to 12-month follow-up) with different cancer-related health outcomes. Methods: In the Physical training and Cancer (Phys-Can) RCT, 577 participants diagnosed with breast (78%), prostate (19%), or colorectal (3%) cancer were randomized to 6 months of exercise during curative cancer treatment. Accelerometer-assessed physical activity and outcome data (ie, cancer-related fatigue, health-related quality of life [HRQoL], anxiety and depression, functioning in daily life, cardiorespiratory fitness, sedentary time and sleep) were collected immediately post-intervention and at 12-month follow-up. Based on the sample’s median of MVPA immediately post-intervention (65 minutes/day) and the changes between the 2 measurement points, 4 categories with different long-term MVPA patterns were created: High & Increasing, High & Decreasing, Low & Increasing, and Low & Decreasing. Multiple linear regression analyses were performed for the analyses. Results: A total of 353 participants were included in the analyses. At 12-month follow-up, a higher MVPA level was significantly associated with lower fatigue in 3 domains (general fatigue [β = −.33], physical fatigue [β = −.53] and reduced activity [β = −.37]), higher cardiorespiratory fitness (β = .34) and less sedentary time (β = −.35). For long-term MVPA patterns, compared to the participants in the “Low & Decreasing” category, those in the “High & Increasing” category reported significantly lower fatigue in 3 domains (general fatigue [β = −1.77], physical fatigue [β = −3.36] and reduced activity [β = −1.58]), higher HRQoL (β = 6.84) and had less sedentary time (β = −1.23). Conclusion: Our results suggest that long-term physical activity is essential for improving health outcomes post-intervention in cancer survivors. Cancer survivors, including those who reach recommended MVPA levels, should be encouraged to maintain or increase MVPA post-intervention for additional health benefits.publishedVersio

Living with cancer - Impact on cancer patient and partner

The overall aim of this thesis was to study different aspects of health on a population based level for persons with four common forms of cancer and their partners, and from an individual level to explore the impact on the daily life situation of living with advanced colorectal cancer for persons with cancer and their partners. Population based register data was used to compare different aspects of health among patients with colorectal, lung, breast and prostate cancer and their partners before and after the cancer diagnosis. The impact of living with advanced colorectal cancer on daily life was sought for both persons with the disease and their partners, by using qualitative interviews. In the first study health care use, diagnoses, and health care costs were analysed for partners (N=11 076). In the second study sick leave was analysed among partners of working age (N=1923). In the third study sick leave was analysed among cancer patients of working age (N=2738) and compared with sick leave in a matched reference cohort (N=12 246). In the fourth study persons with advanced colorectal cancer (n=12) and their partners (n=9) were interviewed about the impact of cancer and its treatment on daily life. Results showed that health care use and health care costs for partners increased in the years following the cancer diagnosis of the person with cancer, mainly for inpatient care. Partners of colon, lung, and prostate cancer patients had the largest increases of health care use. The number of diagnoses increased significantly among partners in the whole sample (RR 1.24; 95% CI, 1.21 to 1.24), with the largest increase in psychiatric diagnoses (RR 2.02; 95% CI, 1.73-2.37). Costs of health care increased most for male partners and especially for younger male partners (age 25 to 64 years) of patients with colorectal cancer and lung cancer. Sick leave among partners increased around the time of the cancer diagnosis for the person with cancer. Partners of persons with colon and lung cancer had the highest number of sick days and of sick leave episodes. Partners of persons with lung cancer had the highest standardised sick day ratio (SSR) compared to the general population (SSR 1.76; 95% CI 1.24-2.40). When it came to sickness absence among cancer patients, lung cancer patients had the highest sick leave rates and prostate cancer patients the lowest. The major part of increase in sickness absence was due to sick leave days, and only a minor part was due to disability pension. Both lung and colon cancer patients had higher sick leave rates compared to their referents already the year before the cancer diagnosis. Irrespective of form of cancer, cancer patients had significantly more sick days in the post diagnostic phase compared to their reference subjects, ranging from five (prostate cancer) to twelve times the amount of sick days (colon and lung cancer). One year post diagnosis less than half of the cancer patients were on sick leave except for lung cancer patients where 63% were still on sick leave. Interviews with persons with advanced colorectal cancer revealed three main categories related to impact on daily life: being inside or outside the healthcare system, striving for normality and becoming conscious about life’s value and vulnerability. Interviews with their partners revealed two main categories related to impact on daily life: living in an altered relation and living in the shadow of the disease. In conclusion, living as a partner of a person with cancer may lead to a decreased health. Supporting the partner through the illness trajectory will benefit both the partner and the person with cancer. The results indicate that apart from the individual perspective, there are also economical incentives for including the partner in supportive cancer care. It is likely to believe that the findings, to some extent, also hold for partners of persons with other cancer forms than the studied. Further research needs to consider consequences for other family members and friends, which may be of equal importance for the person with cancer. The findings of this thesis should be applied to all health care professionals that meet persons with cancer and their partners, in different phases of the disease and in different settings of care

När ett barn dör på intensivvårdsavdelningen

Vården på barnintensivvårdsavdelningen (BIVA) bedrivs utifrån ett familjecentrerat synsätt. När ett svårt sjukt barn vårdas på BIVA leder det till stress och rädsla hos föräldrarna, missnöje uppstår om de får bristande information. Syftet med litteraturstudien var att belysa föräldrarnas upplevelser i samband med att deras barn dör på en intensivvårdsavdelning. Metoden var en litteraturstudie av nio artiklar. Resultatet består av följande områden: beslutet att avsluta livsuppehållande åtgärder, barnets sista tid på BIVA och tiden efter barnets död. Genomgående i studien framkom föräldrarnas behov av: information, stöd från personalen, delaktighet i vården, fysisk kontakt med barnet samt en önskan om att få behålla föräldrarollen. Det som påverkade föräldrarnas beslut var framförallt de egna känslorna, religionen, barnets livskvalitet och personalens rekommendationer

Experiences of living with advanced colorectal cancer from two perspectives - Inside and outside.

PURPOSE: To investigate how life situation by persons with advanced colorectal cancer and their partners is affected by living with the disease and its treatment. METHOD: Separate, individual interviews were made with persons with advanced colorectal cancer (n = 12) and their partners (n = 9) about how their daily lives were affected by the disease and its treatment. The verbatim transcripts were analysed using content analysis. RESULTS: Living with the illness of advanced colorectal cancer was experienced to be: being inside or outside the healthcare system, striving for normality and becoming conscious of life's value and vulnerability. Living as a partner was experienced as living in an altered relation and as living in the shadow of the disease. CONCLUSIONS: When one in a partner relation suffers from colorectal cancer, it changes life and life perspective for both partners. Partners need to be invited to and involved in the care. Cancer nursing should focus on supporting the strive for normality in daily life, as the disease and its' treatment may last for a longer period of time. Supporting the partner may benefit the person with cancer as well, to cope along the illness trajectory

The breath of life - Womens' experiences of breathing adapted radiation therapy.

PURPOSE: To describe and analyze how women with breast cancer experience breathing adapted radiation therapy (BART) and to explore how women manage daily radiation therapy. METHOD: Individual interviews were conducted with 20 women treated with BART for breast cancer concerning their perception of radiation therapy. The transcribed interviews were analyzed using qualitative content analysis. RESULTS: 'The breath of life' was the overall theme, as the women experienced the breathing as a way in which to influence their treatment and thus their survival. 'Participating in one's treatment, for good or ill', was the main category with four subcategories, 'Knowing one has done something good', 'Getting an extra bonus - healthwise', 'The experience of being in control' and 'Being in a high-technology environment'. The breathing technique became the strategy by which they could manage their treatment and gave them a sense of participation which led to a feeling of being in control. The women also felt that breathing benefited their health both mentally and physically. The high-technology environment was experienced as both hopeful and frightening. CONCLUSION: Survival or increasing the chances of survival, are of ultimate importance for a woman with breast cancer. BART requires commitment from the women, which was perceived as offering them an opportunity to participate in their own treatment, for their survival. Increasing the women's possibilities to participate in their treatment benefits their health and welfare during an otherwise turbulent time and allow the rehabilitation process to start during treatment

Adjuvant radiotherapy of women with breast cancer - Information, support and side-effects.

The aim of this study was to 1) examine the occurrence and burden of side effects over time in the period after post surgical adjuvant radiotherapy in women with breast cancer and 2) explore the women's experiences of given information and need of support to handle side effects. MATERIAL AND METHOD: 171 women with breast cancer receiving post-surgical adjuvant radiotherapy completed a questionnaire on radiotherapy-related side effects (Treatment Toxicity Assessment Tool OTTAT) at four times between the start of radiotherapy and six months after completion. Comparisons were made between women with breast conservative surgery (group A) and women with modified mastectomy (group B), and for having chemotherapy or not (C+ and C-). Questions regarding the experience of delivered information and support were added. RESULTS: Fatigue was the single most prevalent side effect and, together with skin reactions and pain, it also had the highest mean score over the study period and the largest score increase during treatment. The largest increase during the six months was seen for skin reaction, pain, and dyspnoea. The average score for skin reaction was significantly higher in group B than in group A. A majority of the women experienced the given information and support as satisfying and a need for follow-up of the side-effects was expressed. CONCLUSION: Nursing for women with breast cancer receiving adjuvant radiotherapy should focus on preventing and treating side effects, and also include the period post treatment. There is a need for developing evidence based guidelines including guidelines for follow-up

Immediate increase in perceived energy after exercise during the course of chemotherapy treatment for breast cancer

Purpose: Exercise during chemotherapy has beneficial long-term effects on women with breast cancer, but shortterm beneficial changes have been less investigated. Though short-term changes may be important as a encouraging factor, this study aimed to investigate immediate changes in self-reported energy, stress, nausea and pain following a single exercise session during chemotherapy. Methods: Forty-six women who were exercising while undergoing adjuvant chemotherapy for breast cancer were included between October 2016 and April 2018. Self-reported energy and stress were assessed before, immediately after and 3 h after exercise sessions by the Stress-Energy Questionnaire. On the same questionnaire nausea and pain were assessed by a Visual Analog Scale. The measurements were completed at four time points during cycles 2 and 5 of the 6-cycle chemotherapy course. Results: Energy level increased immediately after a single exercise session for three out of four periods during the chemotherapy course (p < 0.01), with a larger increase when energy was lower before the session (p < 0.01). Three hours after the exercise session, the energy was about the same level as before the exercise session. Stress decreased immediately after the session during cycle two (p < 0.01) but not cycle five. There were no changes in nausea or pain. Conclusions: Patients undergoing chemotherapy should be informed not only about the long-term advantages of exercise, but also immediate benefits in terms of increased energy. The energy increase both while exercise in the beginning and toward the end of the chemotherapy course, this short-term advantageous consequence may strengthen patients' motivation to exercise. Clinicians should also inform patients that exercise does not seem to worsen nausea and pain

Development and initial psychometric evaluation of a radiotherapy-related symptom assessment tool, based on data from patients with brain tumours undergoing proton beam therapy

BACKGROUND: Currently, no available tool easily and effectively measures both the frequency, intensity and distress of symptoms among patients receiving radiotherapy. A core symptom set (fatigue, insomnia, pain, appetite loss, cognitive problems, anxiety, nausea, depression, constipation, diarrhoea and skin reaction) has been identified and assessed across oncology research to better understand the pattern of symptoms and treatment side effects. AIM: The aim was to develop a tool measuring the multiple-symptom experience in patients undergoing radiotherapy and evaluate its psychometric properties (validity, reliability and responsiveness). DESIGN: This study has a prospective, longitudinal and quantitative design. METHODS: We developed a patient-reported outcome questionnaire, the Radiotherapy-Related Symptoms Assessment Scale to assess the frequency, intensity and distress associated with symptoms. Patients (n = 175) with brain tumours undergoing proton beam therapy completed the Radiotherapy-Related Symptoms Assessment Scale and the health-related quality of life questionnaire (EORTC QLQ-C30) during treatment. We assessed the validity, reliability and responsiveness of the Radiotherapy-Related Symptoms Assessment Scale and evaluated the validity against QLQ-C30. RESULTS: There were significant questionnaire-questionnaire correlations regarding selected items, primarily fatigue, insomnia and pain, indicating satisfactory criterion-related validity. The Radiotherapy-Related Symptoms Assessment Scale had fair to good retest reliability. CONCLUSION: The Radiotherapy-Related Symptoms Assessment Scale is a valid instrument for assessing symptom intensity and distress in patients with brain tumour undergoing PBT, with psychometric properties within the expected range. The Radiotherapy-Related Symptoms Assessment Scale provides nurses with substantial information on symptom experience but requires little effort from the patient. Additional studies are required to further assess the psychometric properties in patients with different cancer diagnoses receiving conventional radiotherapy

Barriers and facilitators for individualized rehabilitation during breast cancer treatment : a focus group study exploring health care professionals' experiences

BACKGROUND: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment. METHODS: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis. RESULTS: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation. CONCLUSION: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment