| 1. |
- Forsberg, Anna, et al.
(författare)
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Once-only colonoscopy or two rounds of faecal immunochemical testing 2 years apart for colorectal cancer screening (SCREESCO): preliminary report of a randomised controlled trial
- 2022
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Ingår i: The Lancet Gastroenterology & Hepatology. - : ELSEVIER INC. - 2468-1253. ; 7:6, s. 513-521
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Tidskriftsartikel (refereegranskat)abstract
- Background Screening for colorectal cancer is done with lower gastrointestinal endoscopy or stool-based tests. There is little evidence from randomised trials to show primary colonoscopy reduces mortality in colorectal cancer We aimed to investigate the effect of screening with once-only colonoscopy or two rounds of faecal immunochemical test screening on colorectal cancer mortality and incidence. Methods We did a randomised controlled trial in Sweden (SCREESCO). Residents in 18 of 21 regions who were age 60 years in the year of randomisation were identified from a population register maintained by the Swedish Tax Agency. A statistician with no further involvement in the trial used a randomised block method to assign individuals to once-only colonoscopy, two rounds of faecal immunochemical testing (OC-Sensor; 2 years apart), or a control group (no intervention; standard diagnostic pathways), in a ratio of 1:6 for colonoscopy versus control and 1:2 for faecal immunochemical testing versus control. Masking was not possible due to the nature of the trial. The primary endpoints of the trial are colorectal cancer mortality and colorectal cancer incidence. Here, we report preliminary participation rates, baseline findings, and adverse events from March, 2014, to December, 2020, in the two intervention groups after completion of recruitment and screening, up to the completion of the second faecal immunochemical testing round. Analyses were done in the intention-to-screen population, defined as all individuals who were randomly assigned to the respective study group. This study is registered with Clinical Trials.gov, NCT02078804. Findings Between March 1, 2014, and Dec 31, 2020, 278 280 people were induded in the study; 31 140 were assigned to the colonoscopy group, 60 300 to the faecal immunochemical test group, and 186 840 to the control group. 10 679 (35.1%) of 30 400 people who received an invitation for colonoscopy participated. 33 383 (55.5%) of 60 137 people who received a postal faecal immunochemical test participated. In the intention-to-screen analysis, colorectal cancer was detected in 49 (0.16%) of 31140 people in the colonoscopy group versus 121 (0. 20%) of 60 300 in the faecal immunochemical test group (relative risk [RR] 0.78, 95% CI 0.56-1.09). Advanced adenomas were detected in 637 (2.05%) people in the colonoscopy group and 968 (1.61%) in the faecal immunochemical test group (RR 1.27, 95% CI 1.15-1.41). Colonoscopy detected more right-sided advanced adenomas than faecal immunochemical testing. There were two perforations and 15 major bleeds in 16 555 colonoscopies. No intervention-related deaths occurred. Interpretation The diagnostic yield and the low number of adverse events indicate that the design from this trial, both for once-only colonoscopy and faecal immunochemical test screening, could be transferred to a population-based screening service if a benefit in disease-specific mortality is subsequently shown. Copyright (C) 2022 Elsevier Ltd. All rights reserved.
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| 2. |
- Fritzell, Kaisa, et al.
(författare)
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Different information needs—The major reasons for calling the helpline when invited to colorectal cancer screening
- 2022
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Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:4, s. 1548-1554
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Fritzell, Kaisa
(författare)
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Familial adenomatous polyposis : a patient perspective on life after surgery
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Familial adenomatous polyposis (FAP) is a rare hereditary condition with a high risk of gastrointestinal cancer. Individuals with FAP are committed to endoscopic screening surveillance throughout life in addition to having to undergo removal of the colon. With the intention to find strategies to develop care and support, the overall aim was to gain a deeper understanding of the life of surgically treated individuals with FAP. The first study used focus group interviews to collect data. The sample consisted of 14 surgically treated individuals, aged 18-75. Studies II-IV employed a cross-sectional design and were based on self-reported standardized questionnaires to measure abdominal symptoms, health-related quality of life, illness perceptions and quality of care. Assessments were performed using the Abdominal Symptom Questionnaire (ASQ), the Medical Outcomes Study Short Form 36 Health Survey (SF-36), the Revised Illness Perception Questionnaire (IPQ-R) and the Quality of Care from the Patients Perspective (QPP). The sample consisted of 209 surgically treated individuals, aged 18-75 (response rate 76%). The focus group interviews revealed that surgically treated individuals’ have several concerns, including issues about hereditary, the life-long nature of their illness and abdominal symptoms. Individuals use different strategies to minimize the effects of their illness on everyday life. The results from the self-reported questionnaires revealed that 91% of the individuals perceived at least one abdominal symptom during the past three months and reported a mean of 7 (SD 4.61; range 1-18) symptoms. A high number of abdominal symptoms predicted poorer health status. Furthermore, individuals perceived FAP as chronic and to a low extent possible to control. Negative consequences of the illness predicted a worse HRQL as did number of abdominal symptoms. Individuals receiving specialized care and those with a low number of abdominal symptoms were more likely to perceive the quality of care they received as better. In conclusion, to improve HRQL abdominal symptoms and negative consequences on life should be monitored and self-care supported when caring for surgically treated individuals with FAP. Care should be provided by a team of health-care professionals specialized in FAP and is recommended to be coordinated by a nurse. Such care should be holistic and focus on supporting the self-care of the individual.
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| 4. |
- Fritzell, Kaisa, et al.
(författare)
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Patients' views of surgery and surveillance for familial adenomatous polyposis.
- 2010
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Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 33:2, s. E17-23
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Familial adenomatous polyposis (FAP) is an inherited condition that requires prophylactic surgery (colectomy) followed by a lifetime program of endoscopic surveillance to prevent colorectal cancer. Patients are normally free of symptoms before surgery but a majority report problems related to bowel function postoperatively.OBJECTIVE: The aim of the study was to gain a deeper understanding of how FAP affects life by exploring patients' view of what it is like living with the illness and being committed to a lifelong screening program.METHODS: Three focus group interviews were conducted, and data were analyzed using descriptive qualitative content analysis.RESULTS: The analysis resulted in two categories related to the participants' view of living with FAP. The first category was associated with concerns related to the hereditary and lifelong nature of the disease as well as to the prophylactic surgery and the second category was related to patients' ways of managing life.CONCLUSION: Most participants expressed unmet needs, such as lack of healthcare providers with good knowledge about FAP, practical and psychosocial support, FAP educational programs, and organized meetings with other persons with the condition.IMPLICATIONS FOR PRACTICE: One important aspect of living with FAP shared by the participants concerned ways of managing life concerns, something that healthcare providers caring for patients with FAP should identify and support. Furthermore, continuity of care by health care providers with good knowledge about FAP can be an important way of reducing patient concerns.
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| 5. |
- Fritzell, Kaisa, et al.
(författare)
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The importance of people's values and preferences for colorectal cancer screening participation
- 2017
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Ingår i: European Journal of Public Health. - : Oxford University Press (OUP). - 1101-1262 .- 1464-360X. ; 27:6, s. 1079-1084
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Tidskriftsartikel (refereegranskat)abstract
- Background: To explore how individuals reason when they make decisions about participating in colorectal cancer(CRC) screening.Methods: Individuals randomized colorectal cancer (CRC) screeningto 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 matrixfor 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 pref-erences between participants and non-participants may be the key to understand why non-participants make theirdecisions not to participate and warrant further exploration.
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| 6. |
- Fritzell, Kaisa, et al.
(författare)
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Translation and cultural adaption of the decisions module for colorectal cancer screening into a Swedish version - the SCREESCO questionnaire
- 2017
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Ingår i: Scandinavian Journal of Gastroenterology. - : Informa UK Limited. - 0036-5521 .- 1502-7708. ; 52:11, s. 1248-1252
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Jervaeus, Anna, et al.
(författare)
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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
- 2019
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Ingår i: World Neurosurgery. - : Elsevier BV. - 1878-8750 .- 1878-8769. ; 126, s. 11-20
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Jervaeus, Anna, et al.
(författare)
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Psychometric properties of the SCREESCO questionnaire used in a colorectal cancer screening programme-A Rasch analysis.
- 2020
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Ingår i: Journal of Evaluation In Clinical Practice. - : John Wiley & Sons. - 1356-1294 .- 1365-2753. ; 26:2, s. 541-550
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
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| 10. |
- Kanter-Smoler, Gunilla, et al.
(författare)
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Clinical characterization and the mutation spectrum in Swedish adenomatous polyposis families
- 2008
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Ingår i: BMC Medicine. - : BioMed Central. - 1741-7015. ; 6
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Tidskriftsartikel (refereegranskat)abstract
- Background: The dominantly inherited condition familial adenomatous polyposis (FAP) is caused by germline mutations in the APC gene. Finding the causative mutations has great implications for the families. Correlating the genotypes to the phenotypes could help to improve the diagnosis and follow-up of patients.Methods: Mutation screening of APCand the clinical characterization of 96 unrelated FAP patients from the Swedish Polyposis Registry was performed. In addition to generally used mutation screening methods, analyses of splicing-affecting mutations and investigations of the presence of low-frequency mutation alleles, indicating mosaics, have been performed, as well as quantitative real-time polymerase chain reaction to detect lowered expression of APC.Results: Sixty-one different APC mutations in 81 of the 96 families were identified and 27 of those are novel. We have previously shown that 6 of the 96 patients carried biallelic MUTYH mutations. The 9 mutation-negative cases all display an attenuated or atypical phenotype. Probands with a genotype (codon 1250-1464) predicting a severe phenotype had a median age at diagnosis of 21.8 (range, 11-49) years compared with 34.4 (range, 14-57) years among those with mutations outside this region (P < 0.017). Dense polyposis (> 1000) occurred in 75% of the probands with a severe phenotype compared with 30% in those with mutations outside this region. The morbidity in colorectal cancer among probands was 25% at a mean age of 37.5 years and 29% at a mean age of 46.6 years.Conclusion: Using a variety of mutation-detection techniques, we have achieved a 100% detection frequency in classical FAP. Probands with APC mutations outside codon 1250-1464, although exhibiting a less-severe phenotype, are at high risk of having a colorectal cancer at diagnosis indicating that age at diagnosis is as important as the severity of the disease for colorectal cancer morbidity. © 2008 Kanter-Smoler et al; licensee BioMed Central Ltd.
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