A systematic review of the psychological impact of false-positive colorectal cancer screening: What is the role of the general practitioner?

Screening for colorectal cancer (CRC) has both advantages (e.g. reduction in morbidity and mortality) and disadvantages (e.g. false positives and distress). A systematic review was therefore performed to improve our understanding of how false-positive CRC screening results affect patients psychologically (and to make recommendations for primary care). The PubMed, Embase, PsychINFO, CINAHL and Cochrane databases were searched in October 2014 and supplemented in December 2016 to identify studies on the psychological impact of false-positive CRC screening. Original studies were eligible when they assessed psychological impact in a screening setting, provided they also included false-positive CRC screening results. Two authors independently assessed 2,367 available manuscripts and included seven. Heterogeneity in their outcome measures meant that data could not be pooled. Two studies showed that a false-positive CRC screening result caused some moderate psychological distress shortly before and after colonoscopy. The remaining five studies illustrated that the psychological distress of patients with true-positive and false-positive CRC screening results was comparable. We conclude that a false-positive CRC screening result may cause some moderate psychological distress, especially just before or after colonoscopy. We recommend that general practitioners mention this when discussing CRC screening with patients and monitor those with a false-positive outcome for psychological distress.

No difference in health-related quality of life, after a food challenge with cashew nut in children participating in a clinical trial.

BACKGROUND: Previous studies showed that health-related quality of life (HRQL) significantly improved after the food challenge, with greater improvements in HRQL after a negative outcome than after a positive outcome. It is currently unknown whether this also occurs in patients undergoing DBPCFCs with cashew nut in the context of a clinical trial. METHODS: Quality of life was studied in children enrolled in a cashew nut study using Food Allergy Quality of Life Questionnaires (FAQLQs). Children, teenagers and parents of the children completed the questionnaires before the challenge test and 6 months after the DBPCFC with cashew nut. The difference in the change in HRQL between the children with a positive and negative DBPCFC outcome was studied by Mann-Whitney U-test. RESULTS: In total, 112 children (67 boys, median age of 9 years) were included. The children, teenagers and parents of the children completed 143 sets of questionnaires in total. There were no significant differences in baseline total and domain scores compared to the follow-up scores in the FAQLQ-CF, FAQLQ-TF and FAQLQ-PF. In children, the delta FAIM score in the negative DBPCFC tested group was significantly better than the delta FAIM score in the positive challenged group (p = 0.026). There were no significant differences in the changes in the scores of the FAQLQ-CF and FAQLQ-PF in the children with a positive challenge outcome, compared to the children with a negative challenge result. However, there was a significant difference in the change in score between the latter groups in the domain 'accidental exposure' of the FAQLQ-TF (p = 0.049). CONCLUSION: This study showed no difference in the change in HRQL scores after a DBPCFC with cashew nut in children participating in a clinical trial. The utility of HRQL as an outcome for clinical trials in food allergy may be limited if participant baseline HRQL is relatively unimpaired.

The compliance and burden of treatment with the epinephrine auto-injector in food-allergic adolescents.

BACKGROUND: Food-allergic patients at high risk of potential fatal anaphylaxis should carry an epinephrine auto-injector (EAI) at all times. This treatment may be perceived as burdensome and this may affect compliance and health-related quality of life (HRQL). The aims of the study were (1) to determine the burden of treatment (BoT) of an EAI, (2) to examine the relationship between this burden and compliance, and (3) to analyze which factors contribute to the BoT of the EAI as perceived by food-allergic adolescents and their parents. METHODS: Dutch food-allergic adolescents prescribed an EAI, and their parents completed a questionnaire package (n = 55). Relationships between BoT and HRQL, illness severity and perception, and anxiety measures were investigated. RESULTS: Food-allergic adolescents and their parents were (extremely) positive about the EAI (54.5%; 72.7%, respectively) (=low BoT). The BoT measure showed a significantly greater burden in food-allergic adolescents prescribed an EAI who reported not carrying the EAI at all times than adolescents who reported they did. The BoT scores of both adolescents and their parents were not associated with HRQL, illness severity and perception, or trait anxiety. CONCLUSIONS: The majority of food-allergic adolescents and their parents were positive about the EAI (=low BoT). However, the BoT was significantly associated with self-reported compliance with carrying the EAI. The BoT was higher in food-allergic adolescents prescribed an EAI who reported not carrying the EAI at all times. The BoT measure seems to be a useful tool to study compliance with carrying an EAI. The BoT of an EAI is not associated with HRQL. The BoT measures a distinct concept related to compliance behavior.

Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents: who makes the difference?

BACKGROUND: Food-allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behavior. Such behavior may be negatively influenced by conflictual situations caused by adolescent-parent disagreement on the adolescent's health-related quality of life (HRQL). Comparisons of adolescent-self-reported and parent-proxy-reported HRQL of food-allergic adolescents have never extensively been studied. The aims of this study were to investigate disagreement in adolescent-self-reports and parent-proxy-reports on the HRQL of food-allergic adolescents and to investigate the factors influencing adolescent-parent disagreement. METHODS: Teenager Form (TF) and Parent Form (PFA) of the Food Allergy Quality of Life Questionnaire (FAQLQ), Food Allergy Independent Measure (FAIM), and Brief-Illness Perception Questionnaire (Brief-IPQ) were sent to food-allergic Dutch adolescents (13-17 years) and their parents. ICCs, t-tests, and Bland-Altman plots were used to investigate adolescent-parent disagreement. Participant characteristics, illness expectations, and illness perceptions influencing adolescent-parent disagreement were studied using regression analysis. RESULTS: Seventy adolescent-parent pairs were included. There were a moderate correlation (ICC = 0.61, P < 0.001) and no significant difference (3.78 vs 3.56, P = 0.103) between adolescent-self-reported and parent-proxy-reported HRQL at group level. However, Bland-Altman plots showed relevant differences (exceeding the minimal important difference) for 63% of all adolescent-parent pairs. Adolescent's age (> 15 years), poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence), and higher adolescent-reported perceived disease severity (Food Allergy Independent Measure-Teenager Form & -Parent Form) were associated with adolescent-parent disagreement. CONCLUSIONS: Adolescent-parent disagreement on the adolescent's HRQL was mainly associated with adolescents' rather than parents' perceptions and characteristics. Illness comprehension of the adolescent may be an important target for intervention aimed at reducing adolescent-parent disagreement.

Parents report better health-related quality of life for their food-allergic children than children themselves.

BACKGROUND: Food allergy affects 5-6% of children and impairs health-related quality of life (HRQL). Children and parents may differ in their views concerning the child's HRQL. In food allergy, child- and parent-proxy-reported HRQL have never been compared using valid disease-specific instruments. OBJECTIVE: The aim of this study was to compare child- and parent-proxy reports on HRQL in food-allergic children (8-12 years). METHODS: The Food Allergy Quality of Life Questionnaire-Child Form (FAQLQ-CF), and -Parent Form (FAQLQ-PF) and the Food Allergy Independent Measure-Child Form and -Parent Form (FAIM-CF and -PF) were completed by Dutch food-allergic child-parent pairs. Child- and parent-proxy reports were correlated and tested for significant differences. Construct validity (Spearman's correlation coefficient between the FAQLQs and FAIMs) and internal consistency (Cronbach's α) were assessed and compared. RESULTS: Seventy-four child-parent pairs were included. The FAQLQ-CF score was significantly higher than the FAQLQ-PF score (3.74 vs. 2.68, P<0.001, where 1 indicates no impairment and 7 indicates extreme impairment). FAIM-CF and -PF scores were almost identical (3.29 vs. 3.33, P=0.594). There was moderate agreement between the FAQLQ-CF and -PF scores (ICC=0.57 [P<0.001]) and good agreement between the FAIM-CF and -PF scores (ICC=0.80 [P<0.001]). Construct validity was confirmed for the FAQLQ-CF (ρ=0.60, P<0.001) and -PF (ρ=0.58, P<0.001). Internal consistency was excellent for the FAQLQ-CF (α=0.95) and -PF (α=0.95). CONCLUSIONS AND CLINICAL RELEVANCE: Parents reported significantly less impact of food allergy on the child's HRQL than children themselves, while reported perceptions of disease severity were nearly identical. This may reflect real differences in perspectives between children and parents and may indicate that parents tend to underestimate their child's HRQL impairment. It is important for clinicians to include both the child's and their parent's perceptions in order to perform a complete assessment of the impact of food allergy on the child's HRQL and to identify areas of disagreement that need special attention in clinical practice.

Health-related quality of life of food allergic patients measured with generic and disease-specific questionnaires.

BACKGROUND: Health-related quality of life (HRQL) has never been measured with both generic and disease-specific questionnaires in the same group of food allergic patients. The aim of this study was to compare HRQL of food allergic patients as measured with generic and disease-specific questionnaires. METHODS: Generic questionnaires (CHQ-CF87 and RAND-36) and disease-specific HRQL questionnaires (FAQLQ-CF, -TF and -AF) were completed by 79 children, 74 adolescents and 72 adults with food allergy. Floor and ceiling effects, percentage of agreement and multivariate stepwise regression analysis were used to compare the generic and disease-specific measurements. RESULTS: The Food Allergy Quality of Life Questionnaires (FAQLQs) showed minimal floor or ceiling effects. The CHQ-CF87 and RAND-36 showed minimal floor effects, but remarkable ceiling effects (> 73%) were found for the scales role functioning-emotional (RE), role functioning-behaviour (RB), role functioning-physical (RP) in children and adolescents and the scale RE (> 79%) in adults. Additionally, we found low percentages of agreement between the generic and disease-specific questionnaires to identify the same food allergic patients with the best or worst HRQL. Only patients with the best disease-specific HRQL also tended to have the best generic HRQL. Finally, the explained variance in HRQL by patient characteristics was higher in the disease-specific questionnaires (30.7-62.8%) than in the generic scales (6.7-31.7%). CONCLUSION: Disease-specific HRQL questionnaires may be more suitable to measure clinically important impairments in HRQL or HRQL differences over time in food allergic patients. However, generic HRQL questionnaires are indispensable for the comparison between different diseases and are thus complementary.

Development, validity and reliability of the food allergy independent measure (FAIM).

BACKGROUND: The Food Allergy Quality of Life Questionnaire-Child Form, -Teenager Form and -Adult Form (FAQLQ-CF, -TF and -AF) have recently been developed. To measure construct validity in the FAQLQs, a suitable independent measure was needed with which FAQLQ scores could be correlated. However, in food allergy, no appropriate independent measure existed, which could be used for this purpose. AIMS OF THE STUDY: The aim of this study was to describe the development of a Food Allergy Independent Measure Child-Form, -Teenager Form and -Adult Form (FAIM-CF, -TF and -AF) and to assess their validity and reliability. METHODS: The FAIMs were developed using previously established methodology to capture the patients' expectation of outcome (EO). Face validity was determined by expert opinion. FAIM questions showing no correlation to any potential items in the FAQLQs were considered irrelevant and eliminated. To measure test-retest reliability, one-hundred and one patients were included and completed the FAIM twice with a 10-14 day interval. The intraclass correlation coefficient (ICC), Lin's concordance correlation coefficient (CCC) and Bland-Altman plots were used to assess test-retest reliability. RESULTS: Six FAIM questions were developed and considered relevant for the FAIM-CF and -AF, and five questions were relevant for the FAIM-TF. The FAIMs showed good reliability with ICCs and CCCs above 0.70 and with mean differences all close to zero. CONCLUSIONS: Food allergy independent measures were developed for children, adolescents and adults and were shown to be valid, relevant and reliable. This supports the suitability of the FAIMs for evaluating construct validity.