Familial adenomatous polyposis : A patient perspective on life after surgery

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, healthrelated 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

Self-reported abdominal symptoms in relation to health status in adult patients with familial adenomatous polyposis

BACKGROUND: Patients with familial adenomatous polyposis who undergo surgery to prevent colorectal cancer experience various abdominal symptoms that may affect their physical and mental health. OBJECTIVE: This study was designed to investigate self-reported presence, frequency, and troublesomeness of abdominal symptoms in such patients in relation to sex, type of surgery, and physical and mental health. DESIGN: A cohort study with a descriptive and comparative cross-sectional design. SETTING AND PARTICIPANTS: All adult patients in the Swedish Polyposis Registry (Karolinska University Hospital, Stockholm, Sweden) who were diagnosed with familial adenomatous polyposis, had undergone prophylactic colorectal surgery, and were aged 18 to 75 years were invited to return a mailed questionnaire. MAIN OUTCOME MEASURES: Self-reported presence, frequency, and troublesomeness of 21 abdominal symptoms were assessed with the Abdominal Symptom Questionnaire. Physical health and mental health were evaluated with the Medical Outcomes Study Short Form 36 Health Survey. RESULTS: Of 275 eligible patients, 209 (76%) responded. Of respondents, 91% reported having had at least 1 symptom during the last 3 months. All 21 symptoms investigated were reported. A higher number of symptoms was reported by women than by men: mean, 7.55 (SD, 4.89) vs 5.14 (4.49); P < .01. No significant difference was found between women and men in overall troublesomeness of symptoms: 3.15 (1.30) vs 3.09 (1.27); P = .763. Self-reported number of symptoms was an independent predictor of physical and mental health, with a high number of symptoms related to poor physical and mental health. LIMITATIONS: The Abdominal Symptom Questionnaire has not been previously used in patients with FAP, and measurement of physical and mental health with the Short Form 36 Health Survey may not capture all aspects of health status in patients with familial adenomatous polyposis. CONCLUSION: Patients with familial adenomatous polyposis suffer from a wide variety of abdominal symptoms after colorectal surgery. Identification of patients with a high number of abdominal symptoms is especially important because the number of abdominal symptoms affects patients’ physical and mental health

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

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

Patients with genetic cancer undergoing surveillance at a specialized clinic rate the quality of their care better than patients at non-specialized clinics

Objectives. To compare ratings of quality of care between patients with genetic cancer who receive specialized care with patients who receive non-specialized care while controlling for socio-demographic and clinical variables; Material and methods. All patients in a national cohort of adult patients diagnosed with familial adenomatous polyposis (FAP) who had undergone prophylactic colorectal surgery were assessed (n = 276, response rate 76%). Quality of care was measured with the Quality of Care from the Patient Perspective (QPP). Univariate and multivariate logistic regression analyses were performed; Results. Patients receiving specialized care were significantly more likely to report the quality of care as better in all three QPP dimensions investigated than those receiving non-specialized care; Conclusions. In order to promote and maintain good quality of care for surgically treated patients with FAP, and to minimize the risk of cancer, specialized care, including continuity and easy access of health care professionals, should be provide

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

Examining the continuum of resistance model in two population-based screening studies in Sweden

In studies recruited on a voluntary basis, lack of representativity may impair the ability to generalize findings to the target population. Previous studies, primarily based on surveys, have suggested that generalizability may be improved by exploiting data on individuals who agreed to participate only after receiving one or several reminders, as such individuals may be more similar to non-participants than what early participants are. Assessing this idea in the context of screenings, we compared sociodemographic characteristics and health across early, late, and non-participants in two large population-based screening studies in Sweden: STROKESTOP II (screening for atrial fibrillation; 6,867 participants) and SCREESCO (screening for colorectal cancer; 39,363 participants). We also explored the opportunities to reproduce the distributions of characteristics in the full invited populations, either by assuming that the non-participants were similar to the late participants, or by applying a linear extrapolation model based on both early and late participants. Findings showed that early and late participants exhibited similar characteristics along most dimensions, including civil status, education, income, and health examination results. Both these types of participants in turn differed from the non-participants, with fewer married, lower educational attainments, and lower incomes. Compared to early participants, late participants were more likely to be born outside of Sweden and to have comorbidities, with non-participants similar or even more so. The two empirical models improved representativity in some cases, but not always. Overall, we found mixed support that data on late participation may be useful for improving representativeness of screening studies

SPIRIT checklist.

BackgroundSweden 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.MethodsThis 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.DiscussionTo 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 contributionLay people are involved throughout the whole development and implementation process of the digital DA.Trial registrationNCT05512260.</div

SPIRIT schedule of enrollment.

BackgroundSweden 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.MethodsThis 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.DiscussionTo 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 contributionLay people are involved throughout the whole development and implementation process of the digital DA.Trial registrationNCT05512260.</div