National Experiences from 30 Years of Provider-Mediated Cascade Testing in Lynch Syndrome Families-The Danish Model.

Cascade genetic testing and surveillance reduce morbidity and mortality in Lynch syndrome. However, barriers to conveying information about genetic disorders within families result in low uptake of genetic testing. Provider-mediated interventions may increase uptake but raise legal and ethical concerns. We describe 30 years of national experience with cascade genetic testing combining family- and provider-mediated contact in Lynch syndrome families in the Danish Hereditary Non-Polyposis Colorectal Cancer (HNPCC) Register. We aimed to estimate the added value of information letters to family members in Lynch syndrome families (provider-mediated contact) compared to family members not receiving such letters and thus relying on family-mediated contact. National clinical practice for cascade genetic testing, encompassing infrastructure, legislation, acceptance, and management of the information letters, is also discussed. Cascade genetic testing resulted in 7.3 additional tests per family. Uptake of genetic testing was 54.4% after family-mediated and 64.9% after provider-mediated contact, corresponding to an odds ratio of 1.8 (p < 0.001). The uptake of genetic testing was highest in the first year after diagnosis of Lynch syndrome in the family, with 72.5% tested after provider-mediated contact. In conclusion, the Danish model combining family- and provider-mediated contact can increase the effect of cascade genetic testing.

From expected to actual barriers and facilitators when implementing a new screening tool: A qualitative study applying the Theoretical Domains Framework.

AIM AND OBJECTIVES: To identify determinants for using a new screening tool to identify older patients eligible for targeted nurse-led intervention, as perceived by healthcare professionals implementing the tool, and to examine how these perceptions changed over time. DESIGN: A cross-sectoral longitudinal qualitative study based on semi-structured interviews with healthcare professionals in a Danish hospital and two collaborating municipalities. METHODS: In three focus groups, seven single interviews and a workshop, we examined the healthcare professionals' perceptions of and attitudes towards the new screening tool before, during and after the implementation. The Theoretical Domains Framework was used to identify the healthcare professionals' perception of barriers and facilitators, followed by content analysis. The results were further discussed using the COM-B system as an analytic framework. This qualitative study is reported according to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist. RESULTS: 'Professional role', 'Goals' and 'Environmental context' were the domains most talked about by the healthcare professionals across the three time points. The content analysis identified four determinants for using the new screening tool:Making time for the project, External motivation and management, Expectations and reality, and Professional identity. The healthcare professionals' perception of the determinants changed during the implementation, influencing their behaviour and, consequently, the implementation's sustainability. CONCLUSION: Perception of barriers and facilitators to the interventions were time- and context-sensitive. Beliefs and motivational factors changed during the project, which points out the importance of following implementation processes systematically to understand the outcome of an intervention. RELEVANCE FOR CLINICAL PRACTICE: Perceptions and attitudes towards a new initiative may change over time, emphasising the importance of following barriers and facilitators during the implementation of an intervention and working with an implementation plan that can be adapted along the way.

Surveillance life and the shaping of 'genetically at risk' chronicities in Denmark.

Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer from developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families' and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon - what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of 'pre-patients' or 'pre-symptomatically ill', we suggest that for those enrolled in lifelong surveillance programmes in welfare state Denmark, the relevance of risk fluctuates according to certain moments in life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterising surveillance life in terms of 'living with chronic risk' we show how 'genetically at risk' chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to recalibrate familial bonds and responsibilities while leading lives punctuated by regular medical check-ups.

"It is two worlds" cross-sectoral nurse collaboration related to care transitions: A qualitative study.

AIMS AND OBJECTIVES: To explore how the hospital and home care nurses talk about and experience cross-sectoral collaboration related to the transitional care of frail older patients. BACKGROUND: Effective communication and collaboration between nurses involved in care transition are crucial for a safe patient handover. Organisational systems to support cross-sectoral collaboration have been developed but do not always promote the intended dialogue and precise and useful exchange of information. Other factors may also be of importance to an effective and constructive cross-sectoral nurse collaboration. DESIGN: A qualitative design using thematic analysis. METHODS: Data were extracted from 24 focus group interviews conducted with registered nurses from eight hospital wards and six municipalities and a total of 165 hr of observations conducted in three hospital wards and three municipalities. The study was reported according to the COREQ guidelines. RESULTS: The perception of nursing and care differed across sectors. The nurses expressed having shared goals for the patients-however, these goals derived from different values, the perception of nursing and approach to the patients. The lack of knowledge of each other's working conditions created assumptions and preconceptions, which affected communication and collaboration related to planning and executing care transition negatively. CONCLUSIONS: The nurses perceived the hospital and home care as" two worlds". The collaboration between the nurses was characterised by insufficient communication and preconceptions rather than concrete knowledge and different cultures and professional identities. It can be questioned whether cross-sectoral collaboration between nurses should be characterised as interprofessional rather than intraprofessional collaboration as the features of the nurses' collaboration. RELEVANCE TO CLINICAL PRACTICE: Organisational and political systems should recognise that nurses in different sectors are taking care of various aspects of nursing when planning on policies to support cross-sectoral collaboration. More possibilities for nurses across sectors to meet should be made available.

Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes.

Dissemination of information on a genetically increased risk should according to guidelines primarily be family-mediated. Incomplete and incorrect information spread has, however, been documented and implies missed possibilities for prevention. In Denmark, the national HNPCC register has been granted an exception to send unsolicited letters with information on hereditary colorectal cancer and an invitation to genetic counseling to members of families with familial and hereditary colorectal cancer. To evaluate this approach, we investigated reactions and attitudes to unsolicited letters in 708 members of families with genetic predisposition and in 1600 individuals from the general population. Support for information letters was expressed by 78% of the family members and by 82% of the general population. Regarding route of information, 90% of family members preferred a letter to no information, 66% preferred information from the hospital rather than from family members and 40% preferred to obtain information from a close family member. Our results suggest that use of unsolicited information letters from the health care system may be a feasible and highly acceptable strategy to disseminate information to families at high risk of colorectal cancer.

Stuck in tradition-A qualitative study on barriers for implementation of evidence-based nutritional care perceived by nursing staff.

AIMS AND OBJECTIVES: To explore the barriers for nutritional care as perceived by nursing staff at an acute orthopaedic ward, aiming to implement evidence-based nutritional care. BACKGROUND: Previous studies indicate that nurses recognise nutritional care as important, but interventions are often lacking. These studies show that a range of barriers influence the attempt to optimise nutritional care. Before the implementation of evidence-based nutritional care, we examined barriers for nutritional care among the nursing staff. DESIGN: Qualitative study. METHODS: Four focus groups with thirteen members of the nursing staff were interviewed between October 2013-June 2014. The interview guide was designed according to the Theoretical Domains Framework. The interviews were analysed using qualitative content analysis. RESULTS: Three main categories emerged: lacking common practice, failing to initiate treatment and struggling with existing resources. The nursing staff was lacking both knowledge and common practice regarding nutritional care. They felt they protected patient autonomy by accepting patient's reluctance to eat or getting a feeding tube. The lack of nutritional focus from doctors decreased the nursing staffs focus leading to nonoptimal nutritional treatment. Competing priorities, physical setting and limited nutritional supplements were believed to hinder nutritional care. CONCLUSION: The results suggest that nutritional care is in a transitional state from experience- to evidence-based practice. Barriers for nutritional care are grounded in lack of knowledge among nursing staff and insufficient collaboration between nursing staff and the doctors. There is a need for nutritional education for the nursing staff and better support from the organisation to help nursing staff provide evidence-based nutritional care. RELEVANCE TO CLINICAL PRACTICE: This study contributes with valuable knowledge before the implementation of evidence-based nutritional care. The study provides an understanding of barriers for nutritional care and presents explanations to why nutritional care has failed to become an integrated part of the daily treatment and care.

Nurses' perspectives on how an e-message system supports cross-sectoral communication in relation to medication administration: A qualitative study.

AIMS AND OBJECTIVES: To describe nurses' perspectives on how an e-message system supports communication between hospital and home care nurses in relation to medication administration. BACKGROUND: Medication administration is a complex process involving a high risk of error. Unclear communication and lack of updated information about medication have been identified as the leading cause of medication errors during care transitions. E-message systems are progressively being used to improve information exchange across sectors, yet little is known about their usage for exchange of medication information between nurses. DESIGN: A qualitative design using content analysis. METHODS: Focus group interviews were conducted with nurses from eight hospital wards and six municipalities (n = 79). Participant observations were conducted in three hospital wards and in three municipalities (165 hr). RESULTS: The e-message system did not provide the information needed by the home care nurses to ensure safe medication administration after discharge due to (1) limitations of the system, (2) hospital nurses' lack of knowledge about home care nurses' information needs and (3) hospital nurses' lack of access to medication information. Due the home care nurses' perception of responsibility, they bypassed the e-message system to get the information. CONCLUSIONS: The home care nurses perceived themselves as the last link in the safety chain. As such, access to adequate information was essential for the nurses to ensure safe medication administration; however, the e-message system did not support exchange of the information needed. RELEVANCE TO CLINICAL PRACTICE: E-message systems must meet home care nurses' need for information to ensure that safe medication administration does not depend on the knowledge of the individual nurse. Moreover, other system factors that influence interprofessional collaboration and nurses' cross-sectoral communication must be addressed.

Balancing life with an increased risk of cancer: lived experiences in healthy individuals with Lynch syndrome.

Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon "living with knowledge about risk." Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control.

Sense of coherence and self-concept in Lynch syndrome.

OBJECTIVE: Most individuals who learn about hereditary cancer manage well, but identification of subgroups who find this knowledge burdening would allow psychosocial intervention. The objective of the study was to assess sense of coherence (SOC) in individuals with Lynch syndrome with comparison to a general population and correlation to self-concept. METHODS: A total of 345 individuals with Lynch syndrome completed the 13-item SOC scale and the 20-item Lynch syndrome self-concept scale. SOC scores were compared to a general Danish population and were correlated to self-concept estimates in individuals with Lynch syndrome. Characteristics of subgroups with adverse scores were described. RESULTS: Individuals with Lynch syndrome reported SOC scores similar to the general population. SOC and self-concept correlated well with a correlation coefficient of -0.51. Subsets with convergent and divergent scores, which may reflect different effects from knowledge about hereditary cancer, were identified. CONCLUSION: Individuals with Lynch syndrome report SOC scores similar to the general population. SOC and self-concept correlate well but allow identification of subset who report adverse outcome and may be relevant for targeted intervention.

100 years Lynch syndrome: what have we learned about psychosocial issues?

In the care of patients with Lynch Syndrome (LS), a range of psychosocial issues are encountered, which significantly affect patient outcomes. A brief historical background of 'psycho-onco-genetics' (the domain where psychology, oncology and genetics meet) in relation to LS is presented, followed by an overview of important psychosocial issues identified in the past 20 years. The identification of mismatch repair genes in 1993-1994 made possible genetic counseling and testing for patients who had cancer and for potentially high-risk relatives without cancer. At that time, concerns were raised about the potentially negative psychosocial impact of predictive genetic testing. Since 1993, a large number of studies have been conducted to investigate the possible psychosocial benefits and limitations of such testing. This article presents an overview of: the uptake of and motivations for genetic testing, its psychosocial impact (e.g. psychological adaptation, impact on risk perception and self-concept, and concerns about, and experiences of, genetic discrimination), psychological screening instruments, adherence to and decision-making about preventive strategies, family communication, lifestyle changes, reproductive technology utilization, and professional psychosocial support needs of members of families with LS. Finally, challenges for the future are discussed, including population screening and genomic testing.

Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study.

An increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome. The recently developed Lynch syndrome self-concept scale contains 20 items within two subscales related to stigma-vulnerability and bowel symptom-related anxiety. Significantly higher total scores, indicating a greater impact on self-concept, were reported by females and by individuals with experience from cancer in close relatives, whereas individuals with less formal education scored significantly higher on the stigma and vulnerability subscale. Scores in the upper quartile were more often reported by women (odds ratio 1.8) and by individuals with less education (OR 1.8). This study provides the first extended use of the Lynch syndrome self-concept scale and suggests that the majority of the Danish mutation carriers adapt well to the situation, though knowledge about the increased risk of cancer seem to have a greater impact in females, individuals with less education and those with experience of cancer in close relatives.

Validation of a self-concept scale for Lynch syndrome in different nationalities.

Learning about hereditary cancer may influence an individual's self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements-the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one's privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.