Impact of peanut allergy on quality of life, stress and anxiety in the family

Background: Peanut allergy (PA) is known to impact on quality of life (QoL) of the sufferer, but little research has focused on all family members. We therefore sought to establish the impact of PA on QoL and reported anxiety of children with clinically confirmed PA, their parents and older siblings. Methods: Forty-six families, who had a child with PA, completed QoL (PedsQLTM or WHOQOL-BREF), anxiety (SCAS or STAI) and perceived stress (PSS) scales. PA children completed a PA specific QoL questionnaire (Pediatr Allergy Immunol 2003;14:378). Parents and sibling also completed QoL proxy questionnaires for the PA child (PedsQLTM, Pediatr Allergy Immunol 2003;14:378). Results: Mothers rated their own psychological (P < 0.01) and physical (P < 0.05) QoL significantly worse than fathers rated theirs, and had higher scores than fathers for anxiety (P < 0.05) and stress (P < 0.001). Children with PA had significantly poorer physical health-related QoL (P < 0.05), QoL within school (P < 0.01) and general QoL (P < 0.05) than their siblings did, and greater separation anxiety (P < 0.05). The majority of differences were between girls with PA and female siblings. Mothers felt that there was a greater impact on QoL for their PA child, compared with that reported by siblings, fathers or the PA children themselves (P < 0.01). Conclusions: Mothers report that they have significantly poorer QoL and suffer more anxiety and stress than fathers do; this inter-parental difference may be an important feature of family stress caused by PA. Siblings have a similar view of how QoL affects the PA child as the PA child does, while mothers may possibly overestimate this impact.

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.

The measurement properties of the menorrhagia multi-attribute quality-of-life scale:a psychometric analysis

Menorrhagia, or heavy menstrual bleeding (HMB), is a common gynaecological condition. As the aim of treatment is to improve women's wellbeing and quality of life (QoL), it is necessary to have effective ways to measure this. This study investigated the reliability and validity of the menorrhagia multi-attribute scale (MMAS), a menorrhagia-specific QoL instrument. Participants (n = 431) completed the MMAS and a battery of other tests as part of the baseline assessment of the ECLIPSE (Effectiveness and Cost-effectiveness of Levonorgestrel-containing Intrauterine system in Primary care against Standard trEatment for menorrhagia) trial. Analyses of their responses suggest that the MMAS has good measurement properties and is therefore an appropriate condition-specific instrument to measure the outcome of treatment for HMB. © 2011 The Authors BJOG An International Journal of Obstetrics and Gynaecology © 2011 RCOG.

Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8–12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers.

Myopia control with orthokeratology contact lenses in Spain:a comparison of vision-related quality-of-life measures between orthokeratology contact lenses and single-vision spectacles

Purpose: To compare vision-related quality-of-life measures between children wearing orthokeratology (OK) contact lenses and distance single-vision (SV) spectacles. Methods: Subjects 6 to 12 years of age and with myopia of -0.75 to -4.00 diopters and astigmatism less than or equal to 1.00 diopters were prospectively assigned OK contact lens or SV spectacle correction. A pediatric refractive error profile questionnaire was administered at 12- and 24-month intervals to evaluate children's perceptions in terms of overall vision, near vision, far distance vision, symptoms, appearance, satisfaction, activities, academic performance, handling, and peer perceptions. The mean score of all items was calculated as the overall score. Additionally, parents/guardians were asked to rate their child's mode of visual correction and their intention to continue treatment after study completion. Results: Thirty-one children were fitted with OK contact lenses and 30 with SV spectacles. Children wearing OK contact lenses rated overall vision, far distance vision, symptoms, appearance, satisfaction, activities, academic performance, handling, peer perceptions, and the overall score significantly better than children wearing SV spectacles (all P<0.05). Near vision and handling were, respectively, rated better (P<0.001) and similar (P=0.44) for SV spectacles in comparison to OK contact lenses. No significant differences were found between 12 and 24 months for any of the subjective ratings assessed (all P>0.05). Parents/guardians of children wearing OK contact lenses rated visual correction method and intention to continue treatment higher than parents of children wearing SV spectacles (P=0.01). Conclusion: The results indicate that the significant improvement in vision-related quality of life and acceptability with OK contact lenses is an incentive to engage in its use for the control of myopia in children.

Quality of life instruments in studies of menorrhagia: a systematic review

BACKGROUND: The use of quality of life (QoL) instruments in menorrhagia research is increasing but there is concern that not enough emphasis is placed on patient-focus in these measurements, i.e. on issues which are of importance to patients and reflect their experiences and concerns (clinical face validity). The objective was to assess the quality of QoL instruments in studies of menorrhagia. STUDY DESIGN: A systematic review of published research. Papers were identified through MEDLINE (1966-April 2000), EMBASE (1980-April 2000), Science Citation Index (1981-April 2000), Social Science Citation Index (1981-April 2000), CINAHL (1982-1999) and PsychLIT (1966-1999), and by manual searching of bibliographies of known primary and review articles. Studies were selected if they assessed women with menorrhagia for life quality, either developing QoL instruments or applying them as an outcome measure. Selected studies were assessed for quality of their QoL instruments, using a 17 items checklist including 10 items for clinical face validity (issues of relevance to patients' expectations and concerns) and 7 items for measurement properties (such as reliability, responsiveness, etc.). RESULTS: A total of 19 articles, 8 on instrument development and 11 on application, were included in the review. The generic Short Form 36 Health Survey Questionnaire (SF36) was used in 12/19 (63%) studies. Only two studies developed new specific QoL instruments for menorrhagia but they complied with 7/17 (41%) and 10/17 (59%) of the quality criteria. Quality assessment showed that only 7/19 (37%) studies complied with more than half the criteria for face validity whereas 17/19 (90%) studies complied with more than half of the criteria for measurement properties (P = 0.0001). CONCLUSION: Among existing QoL instruments, there is good compliance with the quality criteria for measurement properties but not with those for clinical face validity. There is a need to develop methodologically sound disease specific QoL instruments in menorrhagia focussing both on face validity and measurement properties.

Development and psychometric tests of the Chinese-version low vision quality of life questionnaire

Background/Aims: To develop and assess the psychometric validity of a Chinese language Vision Health related quality-of-life (VRQoL) measurement instrument for the Chinese visually impaired. Methods: The Low Vision Quality of Life Questionnaire (LVQOL) was translated and adapted into the Chinese-version Low Vision Quality of Life Questionnaire (CLVQOL). The CLVQOL was completed by 100 randomly selected people with low vision (primary group) and 100 people with normal vision (control group). Ninety-four participants from the primary group completed the CLVQOL a second time 2 weeks later (test-retest group). The internal consistency reliability, test-retest reliability, item-internal consistency, item-discrimination validity, construct validity and discriminatory power of the CLVQOL were calculated. Results: The review committee agreed that the CLVQOL replicated the meaning of the LVQOL and was sensitive to cultural differences. The Cronbach's α coefficient and the split-half coefficient for the four scales and total CLVQOL scales were 0.75-0.97. The test-retest reliability as estimated by the intraclass correlations coefficient was 0.69-0.95. Item-internal consistency was >0.4 and item-discrimination validity was generally <0.40. The Varimax rotation factor analysis of the CLVQOL identified four principal factors. the quality-of-life rating of four subscales and the total score of the CLVQOL of the primary group were lower than those of the Control group, both in hospital-based subjects and community-based subjects. Conclusion: The CLVQOL Chinese is a culturally specific vision-related quality-of-life measure instrument. It satisfies conventional psychometric criteria, discriminates visually healthy populations from low vision patients and may be valuable in screening the local community as well as for use in clinical practice or research. © Springer 2005.

Ethnic differences in health related quality of life for patients with type 2 diabetes

Background - The objective of this study was to investigate the association between ethnicity and health related quality of life (HRQoL) in patients with type 2 diabetes. Methods - The EuroQol EQ-5D measure was administered to 1,978 patients with type 2 diabetes in the UK Asian Diabetes Study (UKADS): 1,486 of south Asian origin (Indian, Pakistani, Bangladeshi or other south Asian) and 492 of white European origin. Multivariate regression using ordinary least square (OLS), Tobit, fractional logit and Censored Least Absolutes Deviations estimators was used to estimate the impact of ethnicity on both visual analogue scale (VAS) and utility scores for the EuroQol EQ-5D. Results - Mean EQ-5D VAS and utility scores were lower among south Asians with diabetes compared to the white European population; the unadjusted effect on the mean EQ-5D VAS score was −7.82 (Standard error [SE] = 1.06, p < 0.01) and on the EQ-5D utility score was −0.06 (SE = 0.02, p < 0.01) (OLS estimator). After controlling for socio-demographic and clinical confounders, the adjusted effect on the EQ-5D VAS score was −9.35 (SE = 2.46, p < 0.01) and on the EQ-5D utility score was 0.06 (SE = 0.04), although the latter was not statistically significant. Conclusions - There was a large and statistically significant association between south Asian ethnicity and lower EQ-5D VAS scores. In contrast, there was no significant difference in EQ-5D utility scores between the south Asian and white European sub-groups. Further research is needed to explain the differences in effects on subjective EQ-5D VAS scores and population-weighted EQ-5D utility scores in this context.

Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria:a cross sectional study

Background: Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life. Procedure: We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire. Results: Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL. Conclusions: Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251.