Making the BEST decision-the BESTa project development, implementation and evaluation of a digital Decision Aid in Swedish cancer screening programmes- a description of a research project.

BACKGROUND: Sweden has a long tradition of organized national population-based screening programmes. Participation rates differ between programmes and regions, being relatively high in some groups, but lower in others. To ensure an equity perspective on screening, it is desirable that individuals make an informed decision based on knowledge rather than ignorance, misconceptions, or fear. Decision Aids (DAs) are set to deliver information about different healthcare options and help individuals to visualize the values associated with each available option. DAs are not intended to guide individuals to choose one option over another. The advantage of an individual Decision Aid (iDA) is that individuals gain knowledge about cancer and screening by accessing one webpage with the possibility to communicate with health professionals and thereafter make their decision regarding participation. The objective is therefore to develop, implement and evaluate a digital iDA for individuals invited to cancer screening in Sweden. METHODS: This study encompasses a process-, implementation-, and outcome evaluation. Multiple methods will be applied including focus group discussions, individual interviews and the usage of the think aloud technique and self-reported questionnaire data. The project is based on The International Patient Decision Aid Standards (IPDAS) framework and the proposed model development process for DAs. Individuals aged 23-74, including women (the cervical-, breast- and CRC screening module) and men (the CRC screening module), will be included in the developmental process. Efforts will be made to recruit participants with self-reported physical and mental limitations, individuals without a permanent residence and ethnic minorities. DISCUSSION: To the best of our knowledge, the present study is the first attempt aimed at developing an iDA for use in the Swedish context. The iDA is intended to facilitate shared decision making about participation in screening. Furthermore, the iDA is expected to increase knowledge and raise awareness about cancer and cancer screening. PATIENT OR PUBLIC CONTRIBUTION: Lay people are involved throughout the whole development and implementation process of the digital DA. TRIAL REGISTRATION: NCT05512260.

"I've never experienced this before, I don't know what I need"- a qualitative study on social support and self-care during the first year after an aneurysmal subarachnoid hemorrhage.

PURPOSE: To describe perceived support, support needs and self-care among individuals during the first year after an aneurysmal subarachnoid hemorrhage (aSAH). MATERIAL AND METHODS: The study had a qualitative descriptive design with a deductive approach using the concepts of social support and self-care. The informants (n = 16) had been treated for aSAH at a university hospital in Sweden and were interviewed one year after the event. The interviews were transcribed verbatim and a manifest directed content analysis was performed. RESULTS: The findings revealed great variation in the narratives, both regarding the support received and the support desired, as well as the described self-care abilities. All codes were covered by the predefined categories and subcategories: social support (including esteem/emotional support, informational support, social companionship, instrumental support) and self-care (including self-management, self-monitoring, symptom management, self-efficacy). CONCLUSIONS: Not being offered the support needed aggravated the possibility to manage the new life after aSAH. The confidence in self-care abilities was influenced by symptom control and how much life had changed in comparison to before the aSAH. Educational efforts are suggested to facilitate the transition from hospital discharge and to promote specialized rehabilitation at home and self-care abilities.

Early supported discharge can be beneficial for aneurysmal subarachnoid (aSAH) patients, including a discharge plan with documented responsibility for continuing rehabilitation and information on follow-ups.Generic rehabilitation programs need to be adapted to a person-centered approach due to the large variation in aSAH patients' support needs and self-care abilities.When planning educational efforts for aSAH patients, the use of a workshop format in the company of others affected is suggested, to share experiences and increase the sense of self-efficacy.

"My head feels like it has gone through a mixer" - a qualitative interview study on recovery 1 year after aneurysmal subarachnoid hemorrhage.

PURPOSE: To describe patients' perceived and expected recovery 1 year after aneurysmal subarachnoid hemorrhage (aSAH). MATERIALS AND METHODS: Semi-structured interviews were conducted with 16 persons 1 year after aSAH. Inductive manifest qualitative content analysis was used. RESULTS: The analysis resulted in two categories and seven subcategories. The category "A spectrum of varying experiences of recovery" includes four subcategories describing physical recovery, mental recovery, alterations in social life, and perceived possibilities to return to normality. Some informants felt that life was almost as before, while others described a completely different life, including a new view of self, altered relationships, not being able to return to work, and effects on personal finances. The category "A spectrum of reflections and expectations of recovery" comprises three subcategories depicturing that expectations of recovery were influenced by existential thoughts, describing what they based own expectations of recovery on, and how expectations from others influenced them. CONCLUSIONS: aSAH was perceived as a life-changing event. The changes impacted on informants' view of self and relationships, and they perceived new barriers in their living conditions. Lack of information on expected recovery was expressed and expectations of recovery were at times unrealistic.IMPLICATIONS FOR REHABILITATIONContracting an aneurysmal subarachnoid hemorrhage (aSAH) is a life-changing event with possible impact on a variety of areas in daily life.There is a need for improved information to aSAH survivors and their significant others on the course of the recovery and possible long-term consequences.aSAH survivors may need assistance to balance unrealistic expectations on recovery.

Different information needs-The major reasons for calling the helpline when invited to colorectal cancer screening.

INTRODUCTION: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline. METHODS: A cross-sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59-60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT). RESULTS: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy. CONCLUSION: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy. PATIENT AND PUBLIC CONTRIBUTION: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate.

Two sides of every coin: individuals' experiences of undergoing colorectal cancer screening by faecal immunochemical test and colonoscopy.

BACKGROUND: Acceptability of the recommended screening procedure represents a crucial determinant of the impact of colorectal cancer (CRC) screening programmes. This study aims to explore how individuals in CRC screening experience the screening procedure. METHODS: Study participants (n = 44), aged 60-62 years, screened by faecal immunochemical test (FIT) and/or colonoscopy, were recruited from the Screening of Swedish Colons (SCREESCO) study. Data were collected through six focus group discussions and 20 individual telephone interviews and analyzed using qualitative content analysis. RESULTS: The analysis resulted in 30 subcategories together forming four categories describing individuals' experiences of the CRC screening procedure: From no worries to bothering emotions; Varying logistical concerns; Being well treated, but inconsistently informed and involved and Expectations not matching reality. Some subcategories only applied to either FIT or colonoscopy screening, while others applied to both screening procedures. CONCLUSIONS: Undergoing CRC screening by FIT or colonoscopy is an individual experience. Strategies to improve patient experiences may include using one-sample FITs and optimizing bowel preparation and scheduling of colonoscopies according to individual preferences. Ensuring that needs for emotional support are acknowledged, together with clear and adequate information delivered at right time are further important aspects to consider.

Decision-making about participation in colorectal cancer screening in Sweden: Autonomous, value-dependent but uninformed?

OBJECTIVE: To investigate knowledge, values and preferences, and involvement among screening participants and non-participants in relation to colorectal cancer (CRC) and screening decision. METHODS: Individuals (N = 2748) from the Screening of Swedish Colons trial were invited to respond to the SCREESCO questionnaire, assessing information/knowledge, values/preferences, and involvement. RESULTS: Respondents' (screening participants, n = 1320; non-participants, n = 161) knowledge varied across items; 90 % recognised faecal blood as a CRC symptom, but less than half cited overweight, smoking, alcohol, and physical inactivity as risk factors. Incidence and case fatality were often over- and underestimated, respectively (>45 and 40 %). Non-participants were more uncertain about their CRC risk (p = 0.015) and less convinced that screening reduces the risk of dying from CRC (p < 0.001). In decision-making, screening participants took most into consideration the importance of early detection and CRC worry, and non-participants the risk of discomfort and complications due to the screening examination (p < 0.001). Most individuals made the decision without involving others. CONCLUSION: For informed and shared decisions, efforts need to be made to increase public knowledge about CRC and to develop interventions to support individuals in decision-making. PRACTICE IMPLICATIONS: These results can inform and guide future initiatives to facilitate high quality decisions and CRC screening uptake in Sweden.

European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

BACKGROUND: Increased knowledge of breast cancer risk factors has meant that we are currently exploring risk-based screening, i.e. determining screening strategies based on women's varying levels of risk. This also enables risk management through primary prevention strategies, e.g. a lifestyle programme or risk-reducing medication. However, future implementation of risk-based screening and prevention will warrant significant changes in current practice and policy. The present study explores women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention to optimise acceptability and uptake. METHODS: A total of 143 women eligible for breast cancer screening in the Netherlands, the United Kingdom, and Sweden participated in focus group discussions. The focus group discussions were transcribed verbatim and the qualitative data was analysed using thematic analysis. RESULTS: Women from all three countries generally agreed on the overall proceedings, e.g. a risk assessment after which the risk estimate is communicated via letter (for below average and average risk) or consultation (for moderate and high risk). However, discrepancies in information needs, preferred risk communication format and risk counselling professional were identified between countries. Additionally, a need to educate healthcare professionals on all aspects of the risk-based screening and prevention programme was established. CONCLUSION: Women's insights identified the need for country-specific standardised protocols regarding the assessment and communication of risk, and the provision of heterogeneous screening and prevention recommendations, monitoring the principle of solidarity in healthcare policy.

Psychometric properties of the SCREESCO questionnaire used in a colorectal cancer screening programme-A Rasch analysis.

INTRODUCTION: Colorectal cancer (CRC) is one of the most common cancer diagnoses among both sexes. Sweden has not yet implemented any CRC screening programme, but a study, Screening of Swedish Colons (SCREESCO), is ongoing. The movement within the health care sector towards a more participatory perspective has led to the increased importance of shared decision making (SDM), and this is suggestively applied when deciding upon screening participation. There is no Swedish questionnaire for assessing the level of SDM in relation to CRC screening. Therefore, the CRC screening module of the National Survey of Medical Decisions was translated and culturally adapted into a Swedish context: the SCREESCO questionnaire. AIM: The SCREESCO questionnaire requires further evaluation, and therefore, the aim, by using the Rasch approach, was to evaluate the psychometric properties of the SCREESCO questionnaire. METHODS: A Rasch partial credit model was chosen to investigate the psychometric properties. The sample consisted of individuals invited to the SCREESCO programme, who have answered the SCREESCO questionnaire. RESULTS: Rating scale structures indicated stability for the response structure used. Satisfactory evidence for validity of internal structure was also shown for the whole questionnaire and two of three concepts/subscales, after deletion of a few items. Validity in response processes indicated acceptable, or close to acceptable, findings, while the results for unidimensionality and differential item functioning (DIF) were somewhat mixed. Separation index revealed less satisfactory results, both for the whole questionnaire and the concepts/subscales. CONCLUSION: This Rasch analysis of the SCREESCO questionnaire revealed that the questionnaire in its current form has difficulties to assess the level of SDM in relation to CRC screening. The achieved results will guide further evaluation and development with the long-term goal of having a Swedish questionnaire, to be used in the health care sector, assessing the level of SDM in relation to CRC screening.

High-intensity exercise during chemotherapy induces beneficial effects 12 months into breast cancer survivorship.

PURPOSE: Whether the benefits of exercise during chemotherapy continue into survivorship is not well-known. Here, the aim was to examine the effects of two exercise interventions on self-reported health-related and objectively measured physiological outcomes 12 months following commencement of chemotherapy. METHODS: Two hundred and forty women with breast cancer stage I-IIIa were randomized to 16 weeks of high-intensity aerobic interval training combined with either resistance training (RT-HIIT), or moderate-intensity aerobic training (AT-HIIT), or to usual care (UC). PRIMARY OUTCOME: cancer-related fatigue (CRF); secondary outcomes: quality of life (QoL), symptom burden, muscle strength, cardiorespiratory-fitness, body mass, and return to work. RESULTS: Compared to UC, both RT-HIIT and AT-HIIT significantly counteracted increases in total CRF (ES = - 0.34; ES = - 0.10), daily life CRF (ES=-0.76; ES=-0.50, and affective CRF (ES=-0.60; ES=-0.39). Both RT-HIIT and AT-HIIT reported significantly lower total symptoms (ES = - 0.46, ES = - 0.46), and displayed gains in lower limb (ES = 0.73; ES = 1.03) and handgrip muscle strength (surgery side ES = 0.70, ES = 0.71; non-surgery side ES = 0.57, ES = 0.59). AT-HIIT displayed significant reductions in body mass (ES = - 0.24), improved QoL: role (ES = 0.33) and emotional functioning (ES = 0.40), and a larger proportion had returned to work (p = 0.02) vs UC. CONCLUSION: These findings emphasize the beneficial effects of supervised high-intensity exercise during chemotherapy to improve the health and to reduce societal costs associated with prolonged sick leave for patients with breast cancer several months following chemotherapy. IMPLICATIONS FOR CANCER SURVIVORS: These findings provide important information with substantial positive consequences for breast cancer survivorship. High-intensity exercise programs during chemotherapy and support to maintain physical activity can be a powerful strategy to manage or prevent many of the short- and long-term adverse effects of treatment for the increasing cohort of cancer survivors.

Women's perceptions of personalized risk-based breast cancer screening and prevention: An international focus group study.

OBJECTIVE: Increased knowledge of breast cancer risk factors enables a shift from one-size-fits-all breast cancer screening to a risk-based approach, tailoring screening policy to a woman's individual risk. New opportunities for prevention will arise. However, before this novel screening and prevention program is introduced, its acceptability from a woman's perspective needs to be explored. METHODS: Women eligible for breast cancer screening in the Netherlands, United Kingdom, and Sweden were invited to take part in focus groups. A total of 143 women participated. Data were transcribed verbatim and analyzed using thematic analysis. RESULTS: Analysis identified five themes across the three countries. The first theme "impact of knowledge" describes women's concern of not being able to unlearn their risk, perceiving it as either a motivator for change or a burden which may lead to stigma. The second theme "belief in science" explains women's need to trust the science behind the risk assessment and subsequent care pathways. Theme three "emotional impact" explores, eg, women's perceived anxiety and (false) reassurance, which may result from knowing their risk. Theme four "decision making" highlights cultural differences in shared versus individual decision making. Theme five "attitude to medication" explores the controversial topic of offering preventative medication for breast cancer risk reduction. CONCLUSIONS: Acceptability of risk-based screening and prevention is mixed. Women's perceptions are informed by a lack of knowledge, cultural norms, and common emotional concerns, which highlights the importance of tailored educational materials and risk counselling to aid either shared or individual informed decision making.

Does the Time Trade-Off Method Reflect Health-Related Quality of Life? A Mixed-Methods Analysis of Preference Measures 10 Years After Aneurysmal Subarachnoid Hemorrhage.

OBJECTIVE: To investigate if the time trade-off (TTO) method reflects health-related quality of life (HRQoL) 10 years after an aneurysmal subarachnoid hemorrhage (aSAH). METHODS: A cross-sectional study with a mixed-methods approach was used to follow up 208 patients treated for aSAH. Data were collected with intramethod mixing; the quantitative data consisted of the EQ-5D-3L instrument and a TTO question, and the qualitative data comprised motivations to the TTO answer. The quantitative data were analyzed statistically and comparisons were made between participants willing to trade off years and those not willing to trade off years. The qualitative data were merged in a matrix and analyzed with manifest content analysis. RESULTS: Participants willing to trade off years scored significantly lower HRQoL, and the correlation between EQ-5Dindex and EQ VAS to TTO values were rs = 0.369 (P < 0.001) and rs = 0.345 (P < 0.001), respectively. In the content analysis, 4 categories emerged: perceived full health or satisfactory life; adaptability and managing strategies; the importance of hope and meaning in life; and unacceptable changes do not make life worth living. The results showed that several reasons other than health status were evident when expressing the willingness to trade off or not trade off life-years. CONCLUSIONS: Individuals willing to trade off years showed significantly poorer HRQoL; however the TTO method did not seem to fully reflect HRQoL. Most participants did not want to trade off years, despite their living with severe disability, making it difficult to fully rely on the TTO method in evaluation of medical outcome.

Are anxiety levels associated with the decision to participate in a Swedish colorectal cancer screening programme? A nationwide cross-sectional study.

OBJECTIVES: Colorectal cancer (CRC) screening programmes are commonly challenged by low uptake, limiting their potential to reduce CRC burden. We aimed to investigate anxiety levels related to the decision to participate or not in CRC screening among screening participants and non-participants. Further to explore associations between higher anxiety levels related to the decision and individuals' characteristics. DESIGN: A nationwide cross-sectional study conducted with individuals included in a national randomised controlled CRC screening trial, the Screening of Swedish Colons (SCREESCO). PARTICIPANTS: A total of 1409 individuals, 60-62 years, recruited from SCREESCO during 2015-2016 participated in the study; 1256 had participated in CRC screening (faecal immunochemical test: n=958; colonoscopy: n=298) and 153 had declined screening participation. MEASURES: Anxiety levels were assessed with the State-Trait Anxiety Inventory (STAI) S-Anxiety Scale. Health literacy (HL) was assessed with the Swedish Functional and Communicative and Critical Health Literacy Scales. RESULTS: Altogether, 79% of survey participants reported lower anxiety levels regarding their CRC screening decision (STAI S-Anxiety <40). Anxiety levels did not differ between screening participants and non-participants (mean STAI S-Anxiety score=34.1 vs 33.9, p=0.859). The odds of reporting higher anxiety levels increased by female sex (OR=1.37; CI 1.04 to 1.80; p=0.025) and previous faecal sampling (OR=1.53; CI 1.14 to 2.05; p=0.004), and decreased if living with partner (OR=0.65; CI 0.48 to 0.88; p=0.005), working (OR=0.72; CI 0.53 to 0.96; p=0.027) or having sufficient HL (functional: OR=0.49; CI 0.33 to 0.73, p≤0.001; communicative and critical: OR=0.55; CI 0.38 to 0.82; p=0.003). CONCLUSIONS: Anxiety levels did not differ between screening participants and non-participants. Higher anxiety scores were associated with certain characteristics. Interventions accounting for these characteristics can be applied to reduce anxiety and facilitate programme acceptance. TRIAL REGISTRATION NUMBER: NCT02078804; Results.

Women's perceptions of the adoption of personalised risk-based breast cancer screening and primary prevention: a systematic review.

INTRODUCTION: Increased knowledge of breast cancer risk factors may enable a paradigm shift from the current age-based mammographic screening programmes to a personalised risk-based approach. This would warrant a significant change in practice, yet the acceptability from a woman's perspective has never been systematically explored. In this systematic review, we inventoried and appraised studies of women's perceptions of risk-based breast cancer screening and prevention to identify factors associated with adopting this new paradigm. METHODS: We searched Medline, Embase and PsycInfo to identify original articles in English containing perceptions of risk-based breast cancer screening and/or primary prevention of women with an average to above average risk of developing breast cancer. Qualitative data were systematically extracted and referenced against four theoretical models of preventative health behaviour adoption. RESULTS: When considering the adoption of this novel screening and prevention programme, women carefully review their perceived susceptibility to breast cancer. Their decisions are based on a cost-benefit analysis of adopting lifestyle changes, chemoprevention, or prophylactic surgery, taking into account their perceived competence, individual autonomy, relatedness to others, and personal preference. The role of intent is limited when considering behavioural change. CONCLUSIONS: Implementing risk-based breast cancer screening and prevention will require a multifactorial approach. The transition from theory to practice can be supported by developing evidence-based shared decision aids and family-oriented (genetic) counselling programmes.

Are we ready for the challenge of implementing risk-based breast cancer screening and primary prevention?

BACKGROUND: Increased knowledge of breast cancer risk factors provides opportunities to shift from a one-size-fits-all screening programme to a personalised approach, where screening and prevention is based on a woman's risk of developing breast cancer. However, potential implementation of this new paradigm could present considerable challenges which the present review aims to explore. METHODS: Bibliographic databases were searched to identify studies evaluating potential implications of the implementation of personalised risk-based screening and primary prevention for breast cancer. Identified themes were evaluated using thematic analysis. RESULTS: The search strategy identified 5699 unique publications, of which 59 were selected for inclusion. Significant changes in policy and practice are warranted. The organisation of breast cancer screening spans several healthcare delivery systems and clinical settings. Feasibility of implementation depends on how healthcare is funded and arranged, and potentially varies between countries. Piloting risk assessment and prevention counselling in primary care settings has highlighted implications relating to the need for extensive additional training on risk (communication) and prevention, impact on workflow, and professionals' personal discomfort breaching the topic with women. Additionally, gaps in risk estimation, psychological, ethical and legal consequences will need to be addressed. CONCLUSION: The present review identified considerable unresolved issues and challenges. Potential implementation will require a more complex framework, in which a country's healthcare regulations, resources, and preferences related to screening and prevention services are taken into account. However, with the insights gained from the present overview, countries expecting to implement risk-based screening and prevention can start to inventory and address the issues that were identified.

Health literacy levels and views about being invited to a colorectal cancer screening program.

BACKGROUND: Sweden has not yet implemented a national screening program for colorectal cancer, but a nationwide study is ongoing; the Screening of Swedish Colons (SCREESCO). Previous research shows that the use of health care services, together with several health-related outcomes, is associated with an individual's level of health literacy. However, the relation between health literacy and participation in colorectal cancer screening has produced varying results reported within the few studies addressing this issue and therefore, further research is warranted. MATERIAL AND METHODS: The aim was to explore health literacy and views about being invited to screening, among participants and non-participants in a national colorectal cancer screening program. They were randomly sampled to fecal immunochemical test or colonoscopy and a mixed methods approach was applied, using questionnaires, focus group discussions and interviews. RESULTS: The majority of individuals, whether they were participants or non-participants in the SCREESCO program, had an acceptable level of health literacy and no significant differences in health literacy levels between the groups were found. Participants expressed that it was important and appreciated to be able to choose information sources on an individual basis. Among non-participants, the importance of receiving invitations with a clear message that quickly draws one's attention was highlighted. However, both groups expressed a positive outlook towards the invitation. The mixed methods approach revealed that findings from interviews and focus group discussions corresponded to items in the health literacy scales. CONCLUSION: A majority of individuals displayed acceptable levels of health literacy, regardless of whether they chose to participate or not. Similarities between the groups were seen in the qualitative findings regarding views of the invitation. Currently, the SCREESCO invitation letter is distributed by regular mail, but in the future a more dynamic approach could be valuable to increase clarity in the message about importance of screening.

Adding high-intensity interval training to conventional training modalities: optimizing health-related outcomes during chemotherapy for breast cancer: the OptiTrain randomized controlled trial.

PURPOSE: Exercise training is an effective and safe way to counteract cancer-related fatigue (CRF) and to improve health-related quality of life (HRQoL). High-intensity interval training has proven beneficial for the health of clinical populations. The aim of this randomized controlled trial was to compare the effects of resistance and high-intensity interval training (RT-HIIT), and moderate-intensity aerobic and high-intensity interval training (AT-HIIT) to usual care (UC) in women with breast cancer undergoing chemotherapy. The primary endpoint was CRF and the secondary endpoints were HRQoL and cancer treatment-related symptoms. METHODS: Two hundred and forty women planned to undergo chemotherapy were randomized to supervised RT-HIIT, AT-HIIT, or UC. Measurements were performed at baseline and at 16 weeks. Questionnaires included Piper Fatigue Scale, EORTC-QLQ-C30, and Memorial Symptom Assessment Scale. RESULTS: The RT-HIIT group was superior to UC for CRF: total CRF (p = 0.02), behavior/daily life (p = 0.01), and sensory/physical (p = 0.03) CRF. Role functioning significantly improved while cognitive functioning was unchanged for RT-HIIT compared to declines shown in the UC group (p = 0.04). AT-HIIT significantly improved emotional functioning versus UC (p = 0.01) and was superior to UC for pain symptoms (p = 0.03). RT-HIIT reported a reduced symptom burden, while AT-HIIT remained stable compared to deteriorations shown by UC (p < 0.01). Only RT-HIIT was superior to UC for total symptoms (p < 0.01). CONCLUSIONS: 16 weeks of resistance and HIIT was effective in preventing increases in CRF and in reducing symptom burden for patients during chemotherapy for breast cancer. These findings add to a growing body of evidence supporting the inclusion of structured exercise prescriptions, including HIIT, as a vital component of cancer rehabilitation. TRIAL REGISTRATION: Clinicaltrials.gov Registration Number: NCT02522260.

Translation and cultural adaption of the decisions module for colorectal cancer screening into a Swedish version - the SCREESCO questionnaire.

OBJECTIVES: Colorectal cancer (CRC) is suitable for population screening due to its high incidence and the recognizable and treatable prephase, and the present study is part of the larger study; Screening for Swedish Colons (SCREESCO). In Sweden, there is, to our knowledge, no questionnaire assessing shared decision making (SDM) with regard to CRC screening and, therefore, the aim of the study was to translate and culturally adapt the CRC screening module of the National Survey of Medical Decisions (DECISIONS) into a Swedish context. MATERIAL AND METHODS: A qualitative design inspired by guidelines based on methods for cross-cultural adaptation of questionnaires was used. In addition, focus group discussions, individual interviews and think-aloud (TA) sessions were performed. RESULTS: Of the 54 items included in the original DECISION survey, 32 were excluded, 22 were modified, and three were added as a result of the qualitative study. How the health care organization communicated and CRC screening knowledge was communicated were found to be the most important cultural differences between Sweden and the USA. The final questionnaire consists of 24 items. CONCLUSION: The process of translation and cultural adaptation of the CRC screening module of the DECISIONS survey resulted in the removal and modifying of a considerable number of items. The major rationale for the removal and modifying of items can be explained by the different cultural traditions between Sweden and the USA when communicating with the health care system regarding screening participation and how CRC screening information and knowledge is communicated.

The importance of people's values and preferences for colorectal cancer screening participation.

Background: To explore how individuals reason when they make decisions about participating in colorectal cancer (CRC) screening. Methods: Individuals randomized to FIT or colonoscopy included in the Screening of Swedish Colons (SCREESCO) program was invited to focus group discussions and individual telephone interviews. The concept of shared decision-making (SDM: information; values/preferences; involvement) was used as a matrix for the analyses. To validate findings, additional focus group discussions using the nominal group technique were performed. Results: Lack of knowledge of CRC and CRC screening was prominent for participants and non-participants, while the results differed between the groups in relation to their values and preferences. The influence of significant others promoted participation while it prevented it among non-participants. Those who participated and those who did not made it clear that there was no need to involve health care professionals when making the decision. Conclusions: Based on the results, a display of different ways to spread knowledge and communicate about CRC and CRC-screening could be applied such as, community-based information campaigns, decisions aids, interactive questionnaires, chat-functions and telephone support. The disparity in values and preferences between participants and non-participants may be the key to understand why non-participants make their decisions not to participate and warrant further exploration.

Metadata and Title Correction: Online Focus Group Discussion is a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience.

[This corrects the article DOI: 10.2196/resprot.5616.].

Online Focus Group Discussion is a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience.

BACKGROUND: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. OBJECTIVE: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. METHODS: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members' evaluations of the discussions. RESULTS: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others' experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. CONCLUSIONS: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience.