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Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging. Conclusion: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning. [ABSTRACT FROM AUTHOR]

Objective: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors. Methods: Data from 675 patients of the control group from the ACTION cluster‐randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem‐focused coping (COPE, Brief COPE inventory; scores 4–16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies. Results: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem‐Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem‐Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem‐Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%). Conclusions: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient. [ABSTRACT FROM AUTHOR]

Erectile dysfunction (ED), affecting men worldwide, is associated with worse mental health. The severity of ED as well as the effect of its treatment can be assessed using valid self-reported outcome measures. A widely used measure is the International Index of Erectile Function short form (IIEF-5) which is not yet validated in Dutch. The objective of this study was to translate the IIEF-5 into Dutch and to investigate its reliability and validity to provide a useful evaluation tool. The IIEF-5 was translated into Dutch following standardized forward–backward procedures. To conduct this observational study, men with symptoms of ED completed the Dutch IIEF-5 at inclusion, 1 week later, and 6 months after inclusion. A population-based sample (reference group) completed the IIEF-5 once. The quality domains reliability and validity were addressed by testing the measurement properties internal consistency, reliability, measurement error, and content validity. Data of 82 patients and 253 reference group participants were analyzed. Internal consistency was adequate with Cronbach’s alpha of 0.94 in both patient and reference group. In patients, the test–retest reliability was adequate with an intra-class correlation coefficient for agreement of 0.88. A floor effect was present in the patient group (42%), though not in the reference group (3%). There was no ceiling effect in patients (0%), while this was present in the reference group (17%). Analysis of responsiveness was not possible due to the limited number of patients receiving treatment. The Dutch IIEF-5 is a reliable and valid measure to determine severity of symptoms of ED. This evaluation tool is valuable for clinical use and interpreting results across international clinical studies. The context of a patient’s sexual life is, however, indispensable and should be taken into account. [ABSTRACT FROM AUTHOR]

Background:Patients' preferences are important for shared decision making. Therefore, we investigated patients' and urologists' preferences for treatment alternatives for early prostate cancer (PC).Methods:A discrete choice experiment was conducted among 150 patients who were waiting for their biopsy results, and 150 urologists. Regression analysis was used to determine patients' and urologists' stated preferences using scenarios based on PC treatment modality (radiotherapy, surgery, and active surveillance (AS)), and risks of urinary incontinence and erectile dysfunction.Results:The response rate was 110 out of 150 (73%) for patients and 50 out of 150 (33%) for urologists. Risk of urinary incontinence was an important determinant of both patients' and urologists' stated preferences for PC treatment (P<0.05). Treatment modality also influenced patients' stated preferences (P<0.05), whereas the risk of erectile dysfunction due to radiotherapy was mainly important to urologists (P<0.05). Both patients and urologists preferred AS to radical treatment, with the exception of patients with anxious/depressed feelings who preferred radical treatment to AS.Conclusion:Although patients and urologists generally may prefer similar treatments for PC, they showed different trade-offs between various specific treatment aspects. This implies that urologists need to be aware of potential differences compared with the patient's perspective on treatment decisions in shared decision making on PC treatment. [ABSTRACT FROM AUTHOR]

Background:Little is known about the effect of participating in a colorectal cancer (CRC) screening programme on quality of life (QOL), neither for participants with a negative nor for those with a positive test result. These findings, however, are important to evaluate the impact of CRC screening.Methods:Participants from CRC screening trials were sent a questionnaire, which included validated measures on generic health-related QOL, generic anxiety and screen-specific anxiety. Both faecal immunochemical test (FIT) and flexible sigmoidoscopy (FS) participants, either with negative or positive test results, were addressed.Results:The response rate was 73% (1289 out of 1772) for FIT and 78% (536 out of 689) for FS participants, with mean ages varying from 63-66 years. Positive FIT participants had worse physical (PCS-12, 47.1 vs 48.3, P=0.02), but equal mental QOL scores (MCS-12, 51.1 vs 51.6, P=0.26). Positive and negative FS participants had similar QOL scores. Both FIT and FS participants with a positive test result reported more screen-specific anxiety than negative FIT and FS participants. Positive and negative FS participants had similar generic anxiety scores.Conclusion:Our findings indicate that the burden of participating in CRC screening may be limited. Conducting a prospective study to confirm these results is recommended. [ABSTRACT FROM AUTHOR]

Introduction: The Global Rating Scale (GRS) is a quality assurance program that was developed in England to assess patient-centered care in endoscopy. The aim of the current studywas to evaluate patient experiences of colonoscopy using the GRS in order to compare different departments and to provide benchmarks. The study also evaluated factors associated with patient satisfaction. Methods: A GRS questionnaire was used both before and after the procedure in outpatients undergoing colonoscopy. The questionnaire assessed the processes associated with the colonoscopy, from making the appointment up until discharge. Mean values and ranges of 12 endoscopy departments were calculated together with P values in order to assess heterogeneity. Results: In total, 1904 pre-procedure and 1532 (80 %) post-procedure questionnaires were returned from 12 endoscopy departments. The mean time patients had to wait for their procedure was 4.3 weeks (range 3.1-5.8 weeks), and 54% (range 35-64%; P<0.001) reported being given a choice of appointment dates/times. Discomfort during colonoscopy was reported by 20% (range 8-40%; P<0.001). Recovery room privacywas satisfactory for 76% of patients (range 66-90%; P<0.05). The majority of patients reported being sufficiently informed about what to do in case of problems after discharge (79 %, range 43-98%; P<0.001), and 85% of individuals stated that they would be willing to repeat the colonoscopy procedure (range 72-92%; P<0.001). Factors associatedwith a decreased willingness to return were the burdensome bowel preparation (odds ratio [OR] =0.25; P<0.001), "rushing staff" attitude (OR=0.57; P<0.05), low acceptance of the procedure (OR=0.42; P<0.01), and more discomfort than expected (OR=0.54; P<0.05). Conclusion: Overall patient experiences with colonoscopywere satisfactory, but they also showed considerable variation. This study shows that use of a GRS patient questionnaire is feasible in the Dutch endoscopy setting for the assessment of patient experience. The significant variability between endoscopy units can be used to benchmark services and enable shortcomings to be identified. [ABSTRACT FROM AUTHOR]

Introduction: The Global Rating Scale (GRS) is a quality assurance program that was developed in England to assess patient-centered care in endoscopy. The aim of the current study was to evaluate patient experiences of colonoscopy using the GRS in order to compare different departments and to provide benchmarks. The study also evaluated factors associated with patient satisfaction. Methods: A GRS questionnaire was used both before and after the procedure in outpatients undergoing colonoscopy. The questionnaire assessed the processes associated with the colonoscopy, from making the appointment up until discharge. Mean values and ranges of 12 endoscopy departments were calculated together with P values in order to assess heterogeneity. Results: In total, 1904 pre-procedure and 1532 (80 %) post-procedure questionnaires were returned from 12 endoscopy departments. The mean time patients had to wait for their procedure was 4.3 weeks (range 3.1-5.8 weeks), and 54% (range 35-64%; P<0.001) reported being given a choice of appointment dates/times. Discomfort during colonoscopy was reported by 20% (range 8-40%; P<0.001). Recovery room privacy was satisfactory for 76% of patients (range 66-90%; P<0.05). The majority of patients reported being sufficiently informed about what to do in case of problems after discharge (79 %, range 43-98%; P<0.001), and 85% of individuals stated that they would be willing to repeat the colonoscopy procedure (range 72-92%; P<0.001). Factors associated with a decreased willingness to return were the burdensome bowel preparation (odds ratio [OR] =0.25; P<0.001), "rushing staff" attitude (OR=0.57; P<0.05), low acceptance of the procedure (OR=0.42; P<0.01), and more discomfort than expected (OR=0.54; P<0.05). Conclusion: Overall patient experiences with colonos copy were satisfactory, but they also showed considerable variation. This study shows that use of a GRS patient questionnaire is feasible in the Dutch endoscopy setting for the assessment of patient experience. The significant variability between endoscopy units can be used to benchmark services and enable shortcomings to be identified. [ABSTRACT FROM AUTHOR]

To document anxiety and depression from pretreatment till 5-year follow-up in 299 men with localized prostate cancer. To assess, if baseline scores were predictive for anxiety and depression at 1-year follow-up. Respondents completed four assessments (pretreatment, at 6 and 12 months, and at 5-year follow-up) on anxiety, depression and mental health. Respondents were subdivided according to therapy (prostatectomy or radiotherapy) and high vs low-anxiety. Pretreatment 28% of all patients were classified as 'high-anxiety'; their average anxiety scores decreased significantly post-treatment, that is towards less anxiety. At all assessments, high-anxiety men treated by prostatectomy reported less depression than high-anxiety men treated by radiotherapy. Of men treated by radiotherapy, 27% reported clinical significant levels of depression while 20% is expected in a general population. The improvement in mental health at 6-months follow-up was statistically significant and clinically meaningful in all respondent groups. Sensitivity of anxiety at baseline as a screening tool was 71% for anxiety and 60% for symptoms of depression. We recommend clinicians to attempt early detection of patients at risk of high levels of anxiety and depression after prostate cancer diagnosis since prevalence is high. STAI-State can be a useful screening tool but needs further development. [ABSTRACT FROM AUTHOR]

Background: Medium, large and giant congenital melanocytic naevi (CMN) can impose a psychosocial burden on patients and families, and are associated with increased risk of developing melanoma or neurological symptoms. Lack of consensus on what outcomes to measure makes it difficult to advise patients and families about treatment and to set up best practice for CMN., Objectives: Fostering consensus among patient representatives and professionals, we aim to develop a core outcome set, defined as the minimum set of outcomes to measure and report in care and all clinical trials of a specific health condition. We focused on the 'what to measure' aspect, the so-called core domain set (CDS), following the COMET and CS-COUSIN guidelines., Methods: We conducted a systematic review to identify outcomes reported in the literature. Focus groups with patient representatives identified patient-reported outcomes. All these outcomes were classified into domains. Through e-Delphi surveys, 144 stakeholders from 27 countries iteratively rated the importance of domains and outcomes. An online consensus meeting attended by seven patient representatives and seven professionals finalized the CDS., Results: We reached consensus on six domains, four of which were applied to both care and research: 'quality of life', 'neoplasms', 'nervous system' and 'anatomy of skin'. 'Adverse events' was specific to care and 'pathology' to research., Conclusions: We have developed a CDS for medium-to-giant CMN. Its application in reporting care and research of CMN will facilitate treatment comparisons. The next step will be to reach consensus on the specific outcomes for each of the domains and what instruments should be used to measure these domains and outcomes., (© 2020 British Association of Dermatologists.)

Introduction: Uptake is an important determinant of the effectiveness of population-based screening. Uptake of colorectal cancer (CRC) screening generally remains sub-optimal., Aim: To determine factors influencing the decision whether to participate or not among individuals invited for faecal occult blood test (FOBT) or flexible sigmoidoscopy (FS) screening., Methods: A questionnaire was sent to a stratified random sample of individuals aged 50-74, previously invited for a randomised CRC screening trial offering FOBT or FS, and a reference group from the same population not previously invited (screening naïve group). The questionnaire assessed reasons for (non)-participation, individuals' characteristics associated with participation, knowledge, attitudes and level of informed choice., Results: The response rate was 75% (n=341/452) for CRC screening participants, 21% (n=676/3212) for non-participants and 38% (n=192/500) for screening-naïve individuals. The main reasons for FOBT and FS participation were acquiring certainty about CRC presence and possible early CRC detection. Anticipated regret and positive attitudes towards CRC screening were strong predictors of actual participation and intention to participate in a next round. The main reason for non-participation in FOBT screening was lack of abdominal complaints. Non-participation in FS screening was additionally influenced by worries about burden. Eighty-one percent of participants and 12% of non-participants made an informed choice on participation., Conclusion: Only 12% of non-participants made an informed choice not to participate. These results imply that governments and/or organizations offering screening should focus on adequately informing and educating target populations about the harms and benefits of CRC screening. This may impact uptake of CRC screening., (Copyright © 2013. Published by Elsevier Ltd.)

Objective: To assess the health-related quality of life (HRQoL) impact of cervical cancer screening in women with normal test results., Design: Questionnaire study., Setting: Maastricht, the Netherlands., Population: A cohort of 789 women were followed from screening invitation until after the receipt of screening results. A female age-matched reference group (n=567) was included., Methods: Questionnaires were sent to the home address of the women before screening, after screening, and again with the screening results., Main Outcome Measures: Generic HRQoL (SF-12, EQ-5D), generic anxiety (STAI-6), screen-specific anxiety (PCQ), and potential symptoms and feelings related to the smear-taking procedure., Results: A total of 60% of screening participants completed questionnaire 1(n=924): 803 of these women granted permission to access their files; 789 of these 803 women had normal test results (Pap 1), and were included in the analyses. Generic HRQoL (SF-12, EQ-5D) and anxiety (STAI-6) scores were similar in the study and reference groups. Before screening, after screening, and also after the receipt of test results, screening participants reported less screen-specific anxiety (PCQ, P<0.001) than the reference group (n=567), with differences indicating clinical relevance. 19% of screening participants were bothered by feelings of shame, pain, inconvenience, or nervousness during smear taking, and 8 and 5% of women experienced lower abdominal pain, vaginal bleeding, discharge, or urinary problems for 2-3 and 4-7 days, respectively, following the Pap smear., Conclusion: The reduced levels of screen-specific anxiety in screening participants, possibly indicating reassurance, are worthwhile addressing in more depth. We conclude that although considerable numbers of women reported unpleasant effects, there were no adverse HRQoL consequences of cervical screening in women with normal test results., (© 2012 The Authors BJOG An International Journal of Obstetrics and Gynaecology © 2012 RCOG.)

Objective: To assess the screening performance of a specific language-screening instrument at 18 and 24 months of age and to assess its effect on the early detection and prognosis of language delay., Design: Child health care physicians were randomised to the intervention group, in which specific language screening was conducted twice (at age 18 months and 24 months), or to the control group (usual care). The specific screening instrument consisted of a uniform set of questions for the parents and test elements for the child, with scaled scores to assess responses., Setting: Child health care in the Netherlands and referral of screen-positive children., Subjects: 5734 children in the intervention group and 4621 in the control group., Main Outcome Measures: Test characteristics and disorders at 24 months, and confirmed diagnoses of a language disorder before 36 months in both groups. Gold standard based on reports of parents, specialists and expert panel. Prognosis estimated from two diagnostic language development performance scores at 36 months (in questionnaire)., Results: In the intervention group, 3147 of the 5734 children (55%) were screened with the specific screening instrument and 73 of the screened children (2.3%) were screen-positive. Of the screen-positive children, 41 (55%) had confirmed language delay (diagnostic assessment and/or reported treatment). The estimated sensitivity of the test ranged between 24-52% depending on the severity of language disorders. The prevalence of language disorders in three-year olds was estimated to be 2.4-5.3%. In the intervention group, 1.25-2 times more children with language delay had been diagnosed before 36 months. The assessment of language development at 36 months showed no statistically significant differences between the intervention and the control groups., Conclusions: The inclusion of a specific language-screening instrument in child health centre activities resulted in the earlier detection of children with language delay. Short-term health benefits could not be demonstrated. Large-scale introduction cannot be recommended on the basis of this information alone.