Health-related Quality Of Life Problems Research Articles

Patient characteristics and frequency of bodily distress syndrome in primary care: a cross-sectional study.

BackgroundBodily distress syndrome (BDS) is a newly proposed diagnosis of medically unexplained symptoms, which is based on empirical research in primary care.AimTo estimate the frequency of BDS in primary care and describe the characteristics of patients with BDS.Design and settingA cross-sectional study of primary care patients in urban and rural areas of Central Denmark Region.MethodData were obtained from GP one-page registration forms, patient questionnaires (including a checklist for BDS), and national registers.ResultsA total of 1356 primary care patients were included, of whom 230 patients (17.0%, 95% confidence intervals [CI] = 15.0 to 19.1) fulfilled the BDS criteria. BDS was more common among primary care patients aged 41–65 years (odds ratio [OR] = 1.9, 95% CI = 1.3 to 3.0) and was equally frequent among males and females (female sex, OR 0.9, 95% CI = 0.6 to 1.3). Patients with BDS were characterised by poor health-related quality of life (HRQOL) on the 12-item Short-Form Health Survey, that is, physical component summary scores <40 (OR 20.5, 95% CI = 12.9 to 32.4) and mental component summary scores <40 (OR 3.5, 95% CI = 2.2 to 5.6). Furthermore, patients with BDS were more likely to have high scores on the Symptom Checklist for anxiety (OR 2.2, 95% CI = 1.4 to 3.4) and depression (OR 5.1, 95% CI = 3.3 to 7.9), but regression analyses showed that mental morbidity did not account for the poor HRQOL.ConclusionBDS is common among primary care patients, and patients with BDS have a higher probability of poor HRQOL and mental health problems.

Cross-sectional sleep thresholds for optimal health and well-being in Australian 4–9-year-olds

AimUsing national Australian time-diary data, we aimed to empirically determine sleep duration thresholds beyond which children have poorer health, learning, quality of life, and weight status and parents have poorer mental health. MethodsDesign/Setting: Cross-sectional data from the first three waves of the Longitudinal Study of Australian Children. Participants: A nationally representative sample of 4983 4–5-year-olds, recruited in 2004 from the Australian Medicare database and followed biennially; 3631 had analyzable sleep information and a concurrent measure of health and well-being for at least one wave. Main measures: Exposure: At each wave, a parent completed 24-h time-use diaries for one randomly selected weekday and one weekend day, including a “sleeping/napping” category. Outcomes: Parent-reported child mental health, health-related quality of life, and maternal/paternal mental health; teacher-reported child language, literacy, mathematical thinking, and approach to learning; and assessed child body mass index and girth. ResultsLinear regression analyses revealed weak, inconsistent relationships between sleep duration and outcomes at every wave. For example, children with versus without psychosocial health-related quality of life problems slept slightly less at 6–7 years (adjusted mean difference 0.12 h; 95% confidence interval 0.01–0.22, p = 0.03), but not at 4–5 (0.00; −0.10 to 0.11, p = 1.0) or 8–9 years (0.09; −0.02 to 0.22, p = 0.1). Empirical exploration using fractional polynomials demonstrated no clear thresholds for sleep duration and any adverse outcome at any wave. ConclusionsPresent guidelines in terms of children's short sleep duration appear misguided. Other parameters such as sleep timing may be more meaningful for understanding optimal child sleep.

How are spousal depressed mood, distress, and quality of life associated with risk of depressed mood in cancer survivors? Longitudinal findings from a national sample.

Spouses of cancer survivors experience both positive and negative effects from caregiving. However, it is less clear what role spousal well-being may have on cancer survivors. This study aimed to determine the impact of spousal psychosocial factors on survivor depressed mood and whether this association differed by gender. We examined longitudinal data on cancer survivors and their spouses (n = 910 dyads) from the 2004-2012 Medical Expenditures Panel Survey and a matched sample of cancer-free dyads. Subjects reported depressed mood, psychologic distress, and mental and physical health-related quality of life (HRQoL) at two time points (T1/T2). Dyadic multilevel models evaluated the impact of psychosocial factors at T1 on depressed mood at T2, controlling for sociodemographics, cancer type, survivor treatment status, and depressed mood at T1. Cancer survivors whose spouses reported depressed mood at T1 were 4.27 times more likely to report depressed mood at T2 [95% confidence interval (CI), 2.01-9.07]; this was stronger for female survivors (OR, 9.49; 95% CI, 2.42-37.20). Better spousal mental and physical HRQoL at T1 were associated with a 30% decrease in survivor depressed mood risk at T2. Most spillover effects were not observed in comparison dyads. Depressed mood and poor HRQoL in spouses may increase the risk of depressed mood in cancer survivors. The risk may be especially strong for female survivors. Identifying and improving spousal mental health and HRQoL problems may reduce the risk of depressed mood in cancer survivors. Future research should examine whether incorporating spousal care into psychooncology and survivorship programs improves survivor outcomes.

Development and assessment of a shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55).

To develop and validate a shortened version of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). A secondary aim was to compare baseline risk factors predicting health-related quality of life (HRQoL) in children newly diagnosed with epilepsy, as identified using the original and shortened version. Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES, N = 373), a multicenter prospective cohort study. Principal component analysis reduced the number of items from the original QOLCE, and factor analysis was used to assess the factor structure of the shortened version. Convergent and divergent validity was assessed by correlating the Child Health Questionnaire (CHQ) with the shortened QOLCE. Multiple regression identified risk factors at diagnosis for HRQoL at 24 months. A four-factor, higher-order, 55-item solution was obtained. A total of 21 items were removed. The final model represents functioning in four dimensions of HRQoL: Cognitive, Emotional, Social, and Physical. The shortened QOLCE demonstrated acceptable fit: Bentler's Comparative Fit Index = 0.944; Tucker-Lewis Index = 0.942; root mean square approximation = 0.058 (90% CI: 0.056-0.061); weighted root mean square residuals (WRMR) = 1.582, and excellent internal consistency (α = 0.96, subscales α > 0.80). Factor loadings were good (first-order: λ = 0.66-0.93; higher-order λ = 0.66-0.85; p < 0.001 for all). The shortened QOLCE scores correlated strongly with similar subscales of the Child Health Questionnaire (ρ = 0.38-0.70) while correlating weakly with dissimilar subscales (ρ = 0.30-0.31). While controlling for HRQoL at diagnosis, predictors for better HRQoL at 24 months were the following: no cognitive problems reported (p = 0.001), better family functioning (p = 0.014), fewer family demands (p = 0.008), with an interaction between baseline HRQoL and cognitive problems (p = 0.011). Results offer initial evidence regarding reliability and validity of the proposed 55-item shortened version of the QOLCE (QOLCE-55). The QOLCE-55 produced results on risk factors consistent with those found using the original measure. Given the fewer items, QOLCE-55 may be a viable option reducing respondent burden when assessing HRQoL in children with epilepsy.

Effects of age on symptom burden, mental health and quality of life amongst people with HIV in the UK.

IntroductionThe evolving HIV epidemic, coupled with advances in HIV treatment, has resulted in an ageing HIV-diagnosed population. It has been suggested that adverse physical and psychological effects of HIV may be higher among older people. However, few studies have examined the effect of older age on well-being for people with HIV.Materials and MethodsThe ASTRA study included 3258 HIV-diagnosed individuals (2248 MSM; 373 heterosexual men; 637 women) recruited from eight UK clinics in 2011–12 (64% response rate). Participants completed a questionnaire that included standard inventories on symptoms and health-related quality of life (HrQoL). Associations of age group with: physical symptom distress (reporting significant distress for ≥1 of 26 symptoms), depression and anxiety (score ≥10 on PHQ-9 and GAD-7, respectively) and HrQoL problem (reporting problems on ≥1 of 5 Eurqol-5D domains) were assessed; adjustment was made for gender/sexuality and time with diagnosed HIV.ResultsOf all participants, 87% were taking ART, 76% had VL ≤50c/mL and 19% had CD4 <350/mm3. Mean age was 45 years (range 18–88) with 5% <30, 23% 30–39, 43% 40–49, 22% 50–59 and 7% ≥60 years. The most prevalent distressing physical symptoms were: lack of energy/tiredness (26%), difficulty sleeping (24%), muscle-ache/joint pain (21%) and pain (18%). With older age, there was no clear trend in prevalence of physical symptom distress, but prevalence of depression and anxiety decreased, while prevalence of HrQoL problems increased. This pattern remained after adjustment for gender/sexuality and time diagnosed with HIV. The increase with age in overall prevalence of HrQoL problem was due to increased problems for “mobility,” “self-care” and “performing usual activities” domains, not an increase in “depression/anxiety.” Longer time with diagnosed HIV was strongly associated with higher prevalence of all symptoms measures and HrQoL problem (p<0.001 for trend, adjusted models).ConclusionsPhysical and psychological symptoms are common among people living with HIV, but the burden of these symptoms is not highest among the older age group. While HrQoL tended to worsen with older age, physical symptom distress did not, and mental health improved. This may reflect greater resilience in older adults, or the potential for “successful ageing”: maintaining mental health despite age-related health losses.

Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma.

Children's health-related quality of life (HrQoL) and psychological problems are important outcomes to consider in clinical decision making in paediatric asthma. However, children's and parents' reports often differ. The present study aimed to examine the levels of agreement/disagreement between children's and parents' reports of HrQoL and psychological problems and to identify socio-demographic, clinical and family variables associated with the extent and direction of (dis)agreement. The sample comprised 279 dyads of Portuguese children with asthma who were between 8 and 18 years of age (M = 12.13; SD = 2.56) and one of their parents. The participants completed self- and proxy-reported questionnaires on paediatric generic HrQoL (KIDSCREEN-10), chronic-generic HrQoL (DISABKIDS-37) and psychological problems (Strengths and Difficulties Questionnaire). Children's and parents' perceptions of family relationships were measured with the Family Environment Scale and the caregiving burden was assessed using the Revised Burden Measure. The child-parent agreement on reported HrQoL and psychological problems was poor to moderate (intraclass correlation coefficients between 0.32 and 0.47). The rates of child-parent discrepancies ranged between 52.7% (psychological problems) and 68.8% (generic HrQoL), with 50.5% and 31.5% of the parents reporting worse generic and chronic-generic HrQoL, respectively, and 33.3% reporting more psychological problems than their children. The extent and direction of disagreement were better explained by family factors than by socio-demographic and clinical variables: a greater caregiving burden was associated with increased discrepancies in both directions and children's and parents' perceptions of less positive family relationships were associated with discrepancies in different directions. Routine assessment of paediatric HrQoL and psychological problems in healthcare and research contexts should include self- and parent-reported data as complementary sources of information, and also consider the family context. The additional cost of conducting a more in-depth assessment of paediatric adaptation outcomes can be offset through more efficient allocation of health resources.

Quality of life and behavioral functioning in Dutch pediatric patients with hereditary spherocytosis.

The objective of this study was to evaluate health-related quality of life (HRQoL) and behavioral functioning in pediatric patients with hereditary spherocytosis (HS). A cross-sectional study was conducted in 132 Dutch children and adolescents with HS and aged 8-18years of whom 48 underwent splenectomy prior to the study. HRQoL was assessed using the KIDSCREEN-27, and behavioral functioning was evaluated using the strength and difficulties questionnaire (SDQ). Scores of pediatric patients with HS were compared to a Dutch norm population. Additionally, the effects of three factors were assessed: fatigue, self-image, and parents' perceived vulnerability (measured with the checklist individual strength, the self-perception profile for children and adolescents, and the child vulnerability scale). Both unsplenectomised and splenectomised pediatric patients reported lower HRQoL on the domain physical well-being (KIDSCREEN-27) compared to Dutch peers. For behavioral functioning, parents of both groups reported more emotional problems (SDQ) compared to the norm population. Pediatric patients with lower scores on physical well-being experienced more fatigue. The patients' perceived social acceptance and parents' perceived vulnerability appeared as determinants of emotional problems. Pediatric patients in the current study generally report few complaints, and the results suggest that these patients overall have a strong ability to cope with HS. Despite these few complaints, fatigue and parents' perceived vulnerability seem to be important determinants for lower HRQoL and more emotional problems. Therefore, screening on these factors could serve as an addition to the treatment of HS, to help pediatric patients who are at risk for lower HRQoL or more emotional problems.

The relationship between Health-Related Quality of Life and sleep problems in children with Autism Spectrum Disorders

Although children with Autism Spectrum Disorders (ASD) are thought to experience sleep problems at a much higher rate than typically developing peers, the relationship between sleep disturbance and Health-Related Quality of Life (HRQoL) has not been explored within this pediatric population. Further, little is understood about the HRQoL of children with ASD in general. This study assessed the HRQoL and sleep health of a sample of children with ASD and investigated the relationship between HRQoL and overall sleep problems within the context of key clinical characteristics. Study participants included 86 parents of children with ASD between the ages of 4 and 12 years. Subjects were recruited from 3 autism specialty clinics at large academic medical centers and asked to proxy-report on their children's HRQoL and sleep habits. Adjusted regression models showed a consistent negative relationship between sleep disturbance and HRQoL, with greater overall sleep problems being associated with poorer total, physical, and psychosocial HRQoL. Sleep duration and sleep anxiety were also found to be negatively associated with HRQoL. These findings suggest that treatments that are effective in treating sleep disturbances may improve children's HRQoL.

Patient-Physician Communication About Health-Related Quality-of-Life Problems: Are Non-Hodgkin Lymphoma Survivors Willing to Talk?

To investigate non-Hodgkin lymphoma (NHL) survivors' willingness to discuss health-related quality-of-life (HRQOL) problems with their follow-up care physician. Willingness to discuss HRQOL problems (physical, daily, emotional, social, and sexual functioning) was examined among 374 NHL survivors, 2 to 5 years postdiagnosis. Survivors were asked if they would bring up HRQOL problems with their physician and indicate reasons why not. Logistic regression models examined the association of patient sociodemographics, clinical characteristics, follow-up care variables, and current HRQOL scores with willingness to discuss HRQOL problems. Overall, 94%, 82%, 76%, 43%, and 49% of survivors would initiate discussions of physical, daily, emotional, social, and sexual functioning, respectively. Survivors who indicated their physician "always" spent enough time with them or rated their care as "excellent" were more willing to discuss HRQOL problems (P < .05). Survivors reporting poorer physical health were less willing to discuss their daily functioning problems (P < .001). Men were more willing to discuss sexual problems than women (P < .001). One in three survivors cited "nothing can be done" as a reason for not discussing daily functioning problems, and at least one in four cited "this was not their doctor's job" and a preference to "talk to another clinician" as reasons for not discussing emotional, social, and sexual functioning. NHL survivors' willingness to raise HRQOL problems with their physician varied by HRQOL domain. For some domains, even when survivors were experiencing problems, they may not discuss them. To deliver cancer care for the whole patient, interventions that facilitate survivor-clinician communication about survivors' HRQOL are needed.

Goal Disturbance and Coping in Children with Type I Diabetes Mellitus: Relationships with Health-Related Quality of Life and A1C

Our first objective was to compare the health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (8-12 years) with that of a healthy reference group, and to compare glycated hemoglobin (A1C) values of these children to recommended guidelines. Our second objective was to examine how goal disturbance and coping behaviour were related to HRQoL and A1C. Forty-three children, 8-12 years of age, completed a set of questionnaires that assessed generic and diabetes-specific HRQoL, goal disturbance and coping behaviour. Demographic and clinical characteristics were extracted from medical records. Children with type 1 diabetes reported lower psychosocial HRQoL than healthy references (d=-0.48), especially on emotional functioning (d=-0.58). Goal disturbance was associated with lower generic HRQoL. Furthermore, the coping strategies avoidance, emotional reaction and wishful thinking were negatively associated with lower generic and disease-specific HRQoL (r ranged from-0.33 to-0.65), whereas acceptance was positively associated with disease-specific HRQoL (r=0.36). The average A1C was with 8.1% significantly above the recommended guidelines of 7.5%. Moreover, the coping strategies avoidance (r=0.31) and emotional reaction (r=0.32) were positively associated with higher blood glucose levels. The psychosocial HRQoL of children with type 1 diabetes was affected, which was directly associated with the inability to reach personal goals (goal disturbance). An accepting coping strategy might solve these HRQoL problems and additionally improve A1C values.

Health-Related Quality of Life among Nonprescription Medicine Customers in Malaysia

ObjectiveTo describe the health-related quality of life (HRQOL) among nonprescription medicine customers in Malaysia and the factors that affect it. MethodsA nationwide cross-sectional survey was conducted among pharmacy customers in 59 randomly selected community pharmacies in Malaysia. The self-administered questionnaire included the EuroQoL five-dimensional (EQ-5D) questionnaire, the EuroQol visual analogue scale (EQ-VAS), nonprescription medicines purchase, and demographic questions. Data were analyzed by using the multivariate analysis of variance and multiple logistic regressions. ResultsA total of 2729 customers enrolled in this study, with a mean EQ-5D questionnaire score of 0.92±0.15 and a mean EQ-VAS score of 69.92±24.80. Compared with the Malaysian adult population, nonprescription medicine customers have a lower mean EQ-5D questionnaire score (t =−4.49, P<0.01) and EQ-VAS score (t =−25.87, P<0.01). We found that pain/discomfort (25.6%) and anxiety/depression (13.7%) were the major HRQOL problems. Locality, age, ethnicity, household income per month, type of occupation, and type of nonprescription medicine purchased were associated with health status of nonprescription medicine customers (F22,5286 = 2.555; Wilks’ lambda = 0.979; P< 0.01). ConclusionsThe HRQOL of nonprescription medicine customers is lower than that of the general Malaysian population. Lower health status was independently associated with older age, living in rural areas, having low income and education level, and purchasing blood and blood-forming medicines from community pharmacy.

Quality of life and symptom prevalence in children with cancer in Lebanon: the perspective of parents.

In evaluating the outcomes of pediatric palliative care, health-care providers rely at times on the parents' input in evaluating children's quality of life and symptom experience. To date, the number of studies addressing the perspective of parents is scarce. Thus, the purpose of this study was to evaluate the quality of life, symptom prevalence and management, and the quality of palliative care provided to Lebanese children with cancer from their parents' perspectives. A convenience sample of 85 caregivers from the Children's Cancer Center of Lebanon was enrolled in the study over a 1-year period [2010-2011]. Using face- to-face interviews, the administered Arabic questionnaire was a combination of the Pediatric Quality of Life Inventory cancer module and the Memorial Symptom Assessment Scale (both parent's versions), and selected items from the Needs at End of life Screening Tool. The majority of the sample was recruited from the outpatient clinic; mean age of children was 12.5 years with the majority having leukemia. According to parents, children encountered health-related quality of life problems in the areas related to nausea, worry and treatment anxiety. The most common symptoms were feeling irritable, feeling nervous, lack of energy, lack of appetite, pain, and feeling sad. The most treated symptoms were found to be nausea, vomiting, cough, and pain with success rates ranging between 56.3% and 73.7%. According to the parents, cancer children had acceptable health-related quality of life. They experienced physical and psychological symptoms that were inadequately managed by the healthcare team. However, parents were highly satisfied with the provided quality of care by the center. The findings in this study highlight the importance of both physical and psychological symptom management among Lebanese children with cancer.

Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Monitoring health-related quality of life (HRQoL) by using electronic patient-reported outcomes (ePROs) has been only minimally evaluated in pediatrics. Children with juvenile idiopathic arthritis (JIA) are at risk for HRQoL problems. The aim of this study was to investigate the effectiveness of ePROs in clinical pediatric rheumatology care. All children (aged 0-18 years) with JIA visiting any of the 4 pediatric rheumatology clinics in Amsterdam between February 2009 and February 2010 were eligible for this sequential cohort intervention study. Before an outpatient consultation, children (aged 8-18 years) or parents (of children aged 0-7 years) completed web-based questionnaires. The resulting ePROfile was provided to the pediatric rheumatologist (PR). The study was divided into a control period in which the ePROfile was not discussed during consultation, and an intervention period in which the ePROfile was provided and discussed during consultation. Effectiveness was evaluated in terms of communication about different HRQoL topics, referral to a psychologist, and satisfaction with the consultations. Out of the eligible JIA patients, 176 (65%) participated in the study. Use of the ePROfile increased discussion of psychosocial topics (P < .01), as well as the PR's satisfaction with provided care during consultation (P < .01). The use of ePROfiles did not affect referrals to a psychologist or parental satisfaction. Parents and PRs evaluated the use of the ePROfile as positive in 80% to 100% of the consultations. Our web-based application to systemically monitor HRQoL problems in pediatric rheumatology contributed significantly to communication about psychosocial issues in a positive way. We recommend implementation of ePROs in pediatric clinical practice.

Main influencing factors and health-related quality of life issues in patients with oesophago-gastric cancer – as measured by EORTC tools

Aim of the studyTo assess influencing factors and main health-related quality of life (HRQoL) issues in patients with cancers of the oesophago-gastric region using the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire Core 30 (QLQ-C30) and its oesophago-gastric module (QLQ-OG25).Material and methodsPatients were qualified for this study based on the histological confirmation of oesophageal, oesophago-gastric or gastric cancers. Each patient filled out the Polish version of the EORTC QLQ-C30, the QLQ-OG25 module and a personal questionnaire. Patients were divided into groups based on gender, age, treatment intention, tumour localization, working status and level of education.ResultsOur study included 112 patients – 39 women (35%) and 73 men (mean age ± SD; 60.2 ±10.9). Thirty-five patients (31.3%) completed the questionnaires twice. Eighty-four (75%) patients had gastric cancer (GC), twenty-six (23.2%) oesophageal cancer (OC) and two (1.8%) cancer of the oesophago-gastric junction (OGJC). Eighty (71.4%) patients underwent surgical treatment prior to either chemo-, radio- or chemoradiotherapy. The Global Health Status scale of the QLQ-C30 inversely correlated with all the other QLQ-C30 and QLQ-OG25 symptom scales (r = –0.26 to –0.61; p < 0.05).ConclusionsThe main HRQoL problems of Polish OC, OGJC and GC patients are fatigue, insomnia, anxiety, and appetite and weight loss. Older age, receiving palliative treatment, having gastric cancer, being on retirement and having lower education are factors associated with higher symptom scores (worse symptoms) and thus poorer HRQoL.

Prospective observational cohort study of Health Related Quality of Life (HRQOL), chronic foot problems and their determinants in gout: a research protocol

BackgroundGout is the commonest inflammatory arthritis affecting around 1.4% of adults in Europe. It is predominantly managed in primary care and classically affects the joints of the foot, particularly the first metatarsophalangeal joint. Gout related factors (including disease characteristics and treatment) as well as comorbid chronic disease are associated with poor Health Related Quality of Life (HRQOL) yet to date there is limited evidence concerning gout in a community setting. Existing epidemiological studies are limited by their cross-sectional design, selection of secondary care patients with atypical disease and the use of generic tools to measure HRQOL. This 3 year primary care-based prospective observational cohort study will describe the spectrum of HRQOL in community dwelling patients with gout, associated factors, predictors of poor outcome, and prevalence and incidence of foot problems in gout patients.MethodsAdults aged ≥ 18 years diagnosed with gout or prescribed colchicine or allopurinol in the preceding 2 years will be identified through Read codes and mailed a series of self-completion postal questionnaires over a 3-year period. Consenting participants will have their general practice medical records reviewed.DiscussionThis is the first prospective cohort study of HRQOL in patients with gout in primary care in the UK. The combination of survey data and medical record review will allow an in-depth understanding of factors that are associated with and lead to poor HRQOL and foot problems in gout. Identification of these factors will improve the management of this prevalent, yet under-treated, condition in primary care.

Assessing parent–child agreement in health-related quality of life among three health status groups

To examine parent-child agreement regarding a child's health-related quality of life (HRQOL) among three health status groups. Parent-child agreement was evaluated for three health status groups of a population-based sample: (1) children with mental health problems (N=461), (2) children with physical health problems (N=281), and (3) healthy controls (N=699). The KIDSCREEN-27 was used to assess HRQOL. The children were 9-14years of age. Intraclass correlation coefficients were mostly good across all HRQOL scores and health status groups. This relatively high level of agreement was also reflected by the following findings: first, the AGREE group was the largest in three out of five HRQOL subscales in all health status groups; second, when disagreement occurred, it was often minor in magnitude. Despite this relatively high level of agreement, the means of self-ratings were significantly higher for all HRQOL scores and health status groups than the means of proxy ratings. These higher self-ratings were especially pronounced among children with mental health problems in certain HRQOL domains. Even though the level of parent-child agreement regarding a child's HRQOL is relatively high, it should be considered that children (especially those with mental health problems) often report better HRQOL than their parents. It is, therefore, highly recommended that both proxy- and self-ratings are used to evaluate a child's HRQOL comprehensively.

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Reporting health‐related quality of life scores to physicians during routine follow‐up visits of pediatric oncology patients: Is it effective?

The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Health-related Quality of Life Before and During Adjuvant Interferon-α Treatment for Patients With Malignant Melanoma (DeCOG-Trial)

Adjuvant treatment with interferon-α (IFN-α) for patients with malignant melanoma can improve relapse-free and overall survival, but IFN-associated side effects may reduce patient's quality of life. The aim of the study was to prospectively evaluate health-related quality of life (HRQoL) in patients with melanoma before and during Low-Dose IFN-α therapy. In a prospective multicenter trial conducted by the Dermatologic Cooperative Oncology Group, 850 patients with cutaneous stage II malignant melanoma received a standard Low-Dose of IFN-α-2a. We evaluated HRQoL using the European Organization for Research and Treatment of Cancer Quality of Life Core 30 questionnaire at baseline and after 3, 6, and 12 months of IFN-α treatment in 282 patients. Nine of 15 subscales showed significant poorer results after 3 months of adjuvant IFN treatment. Symptoms included reduced physical functioning, reduced cognitive functioning, fatigue, nausea, pain, dyspnea, insomnia, diarrhea, and loss of appetite. We did not find a significant change over time for role, emotional, or social functioning. Only cognitive functioning and dyspnea continuously worsened through the twelfth month. At baseline women had significantly lower scores for physical and emotional functioning and for fatigue compared with men. During treatment, women scored significantly poorer on physical functioning, emotional functioning, fatigue, pain, and constipation subscales. Patients who reported having a bad or very bad QoL before treatment were 5.8 times more likely to discontinue treatment early because of psychiatric problems. We conclude that adjuvant low-dose IFN treatment is associated with significant deterioration of HRQoL. Specific psychosocial care should be offered especially for patients who report lower HRQoL and emotional problems before treatment to prevent early discontinuation.

Health‐related quality of life after completion of successful treatment for childhood cancer

Previous studies have assessed health-related quality of life (HRQOL) during several treatment stages in children with cancer, but there is limited knowledge about HRQOL shortly after completing therapy. This study determined HRQOL of children with cancer shortly after the end of successful treatment compared with normative values. Several age-specific HRQOL questionnaires were administered: the ITQOL (generic, proxy-report, 0-4 years), CHQ PF 50 (generic, proxy-report, 5-7 years), Kidscreen (generic, self-report, 8-18 years) and Disabkids (chronic generic, self-report, 8-18 years). Children with cancer (N = 191, mean age 9.25, SD 5.06, 47.1% female) participated. Physical well-being was affected for all ages. Compared to normative values 0- to 7-year-olds were rated significantly lower on the majority of the scales. In addition, 12- to 18-year-olds had significantly better HRQOL than the norm on social scales. Compared to chronically ill norms, 8- to 18-year-olds demonstrated no differences, except for 12- to 18-year-olds who experienced significantly more physical limitations. Additionally, we found that HRQOL of parents of 0- to 7-year-olds was poorer than the norm. HRQOL in children with cancer and their parents can be impaired compared with the norm. Therefore, HRQOL should be monitored in clinical practice to make paediatric oncologists aware of these problems. For young children, we recommend checking whether certain HRQOL problems can be explained by parental worries. For older children and adolescents, paediatric oncologists need to consider social desirability and the child's adaptive style.