Christina Carlsson

Knowledge about hereditary nonpolyposis colorectal cancer; mutation carriers and physicians at equal levels

BackgroundIdentification and adequate management of individuals at risk for hereditary nonpolyposis colorectal cancer (HNPCC) is crucial since surveillance programmes reduce morbidity and mortality. We investigated knowledge about key features of HNPCC in at risk individuals and physicians in surgery, gynecology and oncology.MethodsData were collected using a questionnaire which was answered by 67 mutation carriers and 102 physicians from the southern Swedish health care region. The statements were related to colorectal cancer, heredity and surveillance and the physicians were also asked questions about cancer risks and surveillance strategies.ResultsBoth groups answered questions on colorectal cancer risk, surveillance and genetic testing well, whereas answers about inheritance and risks for HNPCC associated cancer were less accurate. Only half of the family members and one third of the physicians correctly estimated the risk to inherit an HNPCC predisposing mutation. Among family members, young age (<57 years), female sex and recent genetic counseling significantly correlated with better results. Physicians generally underestimated the risk of HNPCC associated cancers and three out of four suggested a later starting age for surveillance than recommended.ConclusionThe finding of similar levels of knowledge about key features of HNPCC in at risk individuals and physicians reflect the challenge physicians face in keeping up to date on hereditary cancer and may have implications for the clinical management and professional relations with HNPCC family members.

Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information, encountering different reactions among family members, and difficulties in communication and relations. The implications described included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary cancer may have.

Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations

BackgroundA growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer.MethodsLynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles.ResultsFamily members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e.g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling.ConclusionsThree major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.

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.

Supporter or obstructer; experiences from contact person activities among Swedish women with breast cancer.

BackgroundSwedish patient associations for breast cancer patients (PABCPs) offer patients with breast cancer unlimited meetings with a breast cancer survivor, a contact person (CP). We applied the voluntary action perspective in this interview study with members of Swedish PABCPs in order to explore how women with breast cancer experienced their contact with a CP from a PABCP.MethodsAudio-taped narratives from 8 women were analysed using Reissmans monitoring and Gees analysis structure.ResultsThree themes appeared: 1. Shared experiences give new perspectives on having cancer, 2. Feelings of isolation are a part of the identity of the illness and 3. Relations with others enable self-help. However, the relationship with the CP is sensitive to timing, correct information and understanding.ConclusionsCPs act as sounding boards and should optimally have capacity for listening, gives support and act as partner in this conversation. On the other hand, CPs should be aware that their presence and limited general medical knowledge could at times disturb the patients psychological recovery and strengthen feelings of isolation. Thus, PABCPs must be careful in selecting CPs and offer relevant educational activities related to the themes identified herein.

The 2015 National Cancer Program in Sweden: Introducing standardized care pathways in a decentralized system

Starting in 2015, the Swedish government has initiated a national reform to standardize cancer patient pathways and thereby eventually speed up treatment of cancer. Cancer care in Sweden is characterized by high survival rates and a generally high quality albeit long waiting times. The objective with the new national program to standardize cancer care pathways is to reduce these waiting times, increase patient satisfaction with cancer care and reduce regional inequalities. A new time-point for measuring the start of a care process is introduced called well-founded suspicion, which is individually designed for each cancer diagnosis. While medical guidelines are well established earlier, the standardisation is achieved by defining time boundaries for each step in the process. The cancer reform program is a collaborative effort initiated and incentivized by the central government while multi-professional groups develop the time-bound standardized care pathways, which the regional authorities are responsible for implementing. The broad stakeholder engagement and time-bound guidelines are interesting approaches to study for other countries that need to streamline care processes.

Motives for becoming and remaining member of patient associations: a study of 1,810 Swedish individuals with cancer associations

Patient associations for cancer patients (PACPs) are increasing in number as well as in the number of members. We utilised a questionnaire to investigate how members of 13 PACPs motivated their memberships. The study included 1,810 individuals who had been treated for breast cancer, gynaecological cancer, or prostate cancer. Through questionnaires these individuals were asked to articulate why they became and chose to remain members. Descriptive statistics and content analyses were used to analyse the open and structured questions. Motives for membership reflected both benefits for the individuals and the welfare of others; themes such as ‘needs related to having cancer’ (reported by 33% as motives for becoming members; 14% for remaining members), ‘wanted to use the PACP’s information and activities’ (24%; 38%) and ‘wanted to support the PACP and its possibilities to have an impact’ (9%; 20%) were dominant. The theme ‘needs and experiences related to having cancer’ was more common among members with breast cancer (38%) and ovarian cancer (36%) than among members with prostate cancer (25%), whereas 53% of men with prostate cancer reported ‘wanted to use the PACP’s information and activities’ compared to 19–9% among female members. The motives showed that needs related to having cancer and that activities and information offered by the PACPs were important to the members, as were their beliefs that the PACP prompted issues that were important to the members.

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.

Benefits from membership in cancer patient associations: Relations to gender and involvement

Cancer patient associations report a growing number of members and increasing possibilities to influence health care, but knowledge about the members’ views on the benefit of involvement is scarce. We therefore investigated how members (n = 1742) of Swedish patient associations for breast cancer and prostate cancer rate the benefit of membership for their physical and psychological well-being and social adjustment to cancer. Using a scoring scale, 2/3 of the members reported that membership had benefit for psychological well-being, whereas half of the members reported benefit for physical well-being and social adjustment. Individuals who had been actively involved in board work and/or contact person activities within the associations reported significantly more benefit for all three parameters. Gender differences were observed with men, represented by individuals affected by prostate cancer, reporting greater benefit for all three parameters, although especially evident for psychological well-being. Individuals who obtained membership within two years of diagnosis reported greater benefit for psychological well-being and social adjustment compared to those who became members later. In conclusion, members in patient associations for cancer report benefit particularly for their psychological well-being and actively involved members and men affected by prostate cancer perceive the greatest benefit from membership.

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.