Quality Of Life Questionnaire For Use Research Articles

The UK National Artificial Eye Questionnaire Study: predictors of artificial eye wearers' experience Part 2 - visual function and quality of life.

To report associations with visual function and quality of life (QOL) in artificial eye wearers. Multicentre, observational, cross-sectional, nationwide study, within the National Health Service England. Items were adopted from the National Eye Institute Visual Function Questionnaire, and incorporated in the National Artificial Eye Questionnaire (NAEQ). The NAEQ was completed by 951 respondents. Multiple regressions assessed associations between the QOL scores and the experiences of artificial eye wearers, their routine management, changes over time, baseline and demographic parameters. Parameters predictive of a better QOL composite score included longer artificial eye wear (β = 0.18, p < 0.001), better appearance (β = 0.17, p < 0.001), better comfort (β = 0.14, p = 0.001), tumour-related anophthalmia (β = 0.13, p = 0.003), male gender (β = 0.13, p < 0.001), shorter period of adjustment to monocular vision (β = 0.12, p < 0.001) and use of soap for cleaning (β = 0.09, p = 0.046). The composite score continued to improve beyond 10 years of prosthesis wear (≤2 years mean 72.80 ± 1.65 versus >10 years mean 79.45 ± 0.70; p = 0.001). Both better prosthesis appearance (β = 0.14, p = 0.022) and improved motility (β = 0.13, p = 0.042) predicted a better dependency score. Use of lubricating ointment predicted a worse dependency score (β = 0.23, p = 0.003). Neither the frequency of removal, nor the cleaning frequency of the artificial eye correlated with QOL scales. Multiple factors in the artificial eye experience were found to predict visual function and QOL aspects. This study underscores the need to generate a dedicated QOL questionnaire for use in anophthalmic patients.

Normal Tissue Complication Probability (NTCP) modeling and validation of quantitative analysis of normal tissue effects in the clinic (QUANTEC) guideline using quality of life questionnaire for parotid gland during head and neck radiotherapy

Introduction: Radiation therapy is the main treatment method for head and neck cancers, which comprise 3–5% of all cancers. A major side effect of this treatment is complication of the parotid glands, i.e. xerostomia, which occurs at relatively low doses. This complication leads to mouth dryness which is the most common problem for head and neck cancer survivors. There are different grades of xerostomia and severe xerostomia is defined as a long-term reduction in the function of salivary gland to less than 25% relative to the pre-radiotherapy baseline value. The grading of xerostomia is usually assessed by patient self-reports carried out by the quality of life questionnaire (QoL), designed based on indigenous criteria and internationally recognized protocols. In recent years several studies have focused on normal tissue complication probability (NTCP) modeling of xerostomia using quality of life questionnaires with or without functional analysis based on various standard model parameters. Lyman (LKB) model is commonly used to predict the normal tissue complication probability (NTCP). This model uses the patient’s calculated dose volume histogram of (DVH) of an organ at risk (OAR) and the dose response curve parameters. The quantitative analysis of normal tissue effects in the clinic (QUANTEC) effort is to refine the guidelines based on 3D dose/volume and outcome data. According to QUANTEC guideline to limit the severity of xerostomia, maximum dose received by one or both of parotid glands should be 20 Gy and 25 Gy (20/25 Gy), respectively. The aim of this study was to evaluate the NTCP model parameters for all grades of acute parotid complications using the LKB model during head and neck conformal radiotherapy treatment and using a QoL questionnaire. Materials and Methods: 50 patients with head and neck cancer who have been referred for radiotherapy to Milad Hospital in Isfahan, Iran, were selected. QoL questionnaire datasets of patients with squamous cell carcinoma and lymph node cancers beside the parotids were within the radiation field were analyzed. The European organization for research and treatment of cancer (EORTC) QLQ HN35 was used in three stages (before, during and at the end of treatment). Prescribed dose per fraction was modified to 2 Gy/fraction equivalent dose for each patients. The LKB model with DVH reduction to form the equivalent uniform dose (EUD), known as LEUD was used. The model parameters of TD50 (Tolerance Dose 50%) and m was assessed by fitting the patient reported complication data to the normal tissue complication probability (NTCP) curve. Results: One patient (2%) at stage 2 and 5 patients (10%) at stage 3 experienced grade 3 xerostomia. The dose-response curves (LKB model) for occurrence of xerostomia was fitted to the QoL data which were collected at stages 2 and 3. These parameters were TD50 =23.3Gy, m =1 and TD50 =21.6 Gy, m =1 at stage 2 and stage 3, respectively. Conclusion: The agreement between the NTCP modeling based on QoL questionnaire data and the QUANTEC guidelines, confirms the cutoff values of 20/25 Gy to spare the parotid gland.

Quality of Life in Palliative Care.

A main goals of palliative care is to improve the health-related quality of life (QOL) of patients with advanced illnesses. The objective of this narrative review is to provide an updated synopsis on the use of QOL questionnaires in the palliative care setting. Focusing on the palliative cares setting, we will define QOL, discuss how QOL instruments can be used clinically and in research, review approaches to validate these questionnaires, and how they can be used in utility analyses. Several QOL questionnaires, such as EORTC-QLQ-C30, McGill QOL questionnaire and EQ-5D have been validated in the palliative care setting. However, significant gaps impede their application, including lack of determination of their responsiveness to change and minimal clinically important differences, the need to conduct more psychometric validation on QOL questionnaires among patients at various stages of disease trajectory, and the paucity of studies examining utility and cost-effectiveness. Further research is needed to address these knowledge gaps so QOL questionnaires can be better used to inform clinical practice and research.

Quality of life questionnaires in otorhinolaryngology: a systematic overview

The importance of quality of life (QOL) as an endpoint and the use of validated QOL questionnaires have increased over time. To evaluate health-related quality of life (HR-QOL) measurement instruments used in patients in otorhinolaryngology (ORL). We aimed to establish the use of QOL questionnaires in ORL over a period of time, establish the use of QOL questionnaires within different domains and determine the use of validated QOL questionnaires. We performed a comprehensive search in PubMed up to 1 January 2014. Articles were included that measured HR-QOL questionnaires in clinical practice in children, adolescents or adults in 42 journals of ORL. Multiple unique QOL questionnaires, organised according to domain, time and survey of validation, were extracted from reported articles. Of 2442 articles, we utilised 1196 publications with a total of 2103 QOL questionnaires regarding ORL. We evaluated a variety of 363 unique QOL questionnaires in which 60% (n = 220) QOL questionnaires had been validated. We found a continuing increase in the amount of articles which used QOL questionnaires since the beginning of the 20th century, while the percentage of validated QOL questionnaires remained the same (76%). Most QOL questionnaires were used in the domains oncology (35%), otology (21%) and rhinology (20%). The domain otology had the largest amount of unique QOL questionnaires (n = 122). We identified and evaluated all unique HR-QOL questionnaires utilised in patients in ORL. Recently, the use of validated and non-validated HR-QOL questionnaires has increased within all domains of ORL. The assessment of QOL has become an important outcome measure in clinical practice, in medical research and for healthcare organisations.

Quality of Life of Children with ASD

Autism Spectrum Disorder (ASD) describes a range of conditions classified as neurodevelopmental disorders in DSM-5, which are characterized by social deficits and communication difficulties, stereotyped or repetitive behaviours and interests, sensory issues, and in some cases, cognitive delays. In the past, autism was considered a rare condition, but plenty of recent studies indicate that prevalence can be nearly 1% for the broader autism spectrum. The researchers searched the digital library database for articles related to the quality of life (QoL) of autistic children. It proved that more research on the quality of life for autistic children and their parent’s abroad. However, the original study was flawed by ascertainment etiology, pathogenesis and early autistic symptoms. Domestic rare research reports on the quality of survival. Moreover, compared with other conditions there has been a lack of focus on quality of life (QoL).With the conversion of the biomedical model to the bio-psycho-social medical model, measuring for children and young people with Autism Spectrum Disorder (ASD), thinking about how to improve the quality of life is more and more attention. The most widely used diagnostic criteria for AD are those described in the revised text edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) of the American Psychiatric Association. This study examined Paediatric Quality of Life (PQOL) of autistic children, from a multidimensional perspective. The proposed model was based on the Cross-sectional survey, with Physiological function, emotional function, social function, and school performance as components. This study aimed to evaluate the validity of existing QoL questionnaires for use with children with ASD aged 8–12 years. Method: 200 autistic children (male: 118, female: 82; 2 ~ 4 years old: 80, 5 ~ 7 year old: 87, 8 ~ 12 years old: 33) and 120 normal children (control group) are brought into this study. Separate path analyses were performed to evaluate models of QOL and Intelligent evaluation. The PedsQL (Pediatric Quality of Life Inventory) as robust measures used with children with neurodevelopmental disorders. Results: In the study, the test group had lower scores on the PedsQL4.0 universality Core scale, in comparison with the control group. Behaviour problems had a negative indirect effect on Community adaptation, mental health and school performance and a lower intelligence-related quality of life for children with autistic disorder and clinically significant autistic symptoms in comparison with children and fewer symptoms. Conclusion: Results suggest greater impairment in adaptive functioning and emotional disorders. For highfunctioning autism children, potential positive development played significant roles in rehabilitation, to achieve and maintain the best level of intervention. The severity of the disorder and social support coping strategies were related with Life self-care ability and adaptation, coping with intelligent obstacle seriously. Physicians are encouraged to evaluate for early treatment in the overall care plan.

Clinical evaluation of quality of life: a survey among members of European Society of Thoracic Surgeons (ESTS).

Quality of life (QoL) has been recognized as an important postoperative outcome. Despite the growing interest in this topic, there is almost no information about the daily use of QoL questionnaires within European Society of Thoracic Surgery (ESTS). The aim of this paper is to present the results of a survey launched to know the current practice of collecting and using QoL data within the Society. The survey was designed by the members of the QoL and Patient Safety ESTS committee and included 13 questions about different aspects of QoL assessment: time points of data collection, type and method of administration of questionnaires, dropouts, surgical-related symptoms and definition of the target population. An electronic link was sent to invite 1250 ESTS members to complete the survey by e-mail. One hundred and fifty surgeons worldwide completed the survey. Of the total, 54.4% of the surgeons indicated that they never collect QoL data in their daily practice. Both SF-36 and EORTC C30 were the most commonly used questionnaires. They are considered as the most appropriate for thoracic surgery patients. Only 20% of the surgeons used the LC-13 module in addition. Most of the time (45.5%), questionnaires are completed through a face-to-face interview led by a physician. Only 21.2% of the responders collected data prior to surgery; 39.3% of the responders collect QoL data only from lung cancer patients and 16% add patients with oesophageal diseases. Postoperative complications, comorbidities, surgical and oncological baseline data and wound pain, healing disorders, arm mobility, oxygen dependency, return to work and postoperative medication were important items that responders suggested to include in future questionnaires. The obtained data showed a broad area for improvement in QoL. The ESTS has to lead this effort collaborating to standardize the research in this field, endorsing specific questionnaires, incorporating patient-reported outcomes more and more into guidelines and facilitating multicentre studies.

The Validity and Usefulness of the Japanese Version of the Calgary Sleep Apnea Quality of Life Index in Patients with Obstructive Sleep Apnea Hypopnea Syndrome

The main purpose of this study was to translate the Calgary sleep apnea quality of life index (SAQLI) and to evaluate the reliability, validity and responsiveness of the Japanese version of the SAQLI (SAQLI-J). Translation of the SAQLI questionnaire into the SAQLI-J questionnaire was performed following the guidelines of cross-cultural adaptation of health-related quality of life (QOL) measures. All patients completed the following questionnaires both at baseline and three months later: the SAQLI-J, the medical outcome survey short form (SF-36) and the Epworth sleepiness scale (ESS). The SAQLI-J was conducted by an interviewer. One hundred and fifteen obstructive sleep apnea hypopnea syndrome (OSAHS) patients were recruited into the present study. The internal consistency and test-retest reliability of the total SAQLI-J scores (SAQLI-J total) were both excellent. Regarding construct validity, the SAQLI-J was tested by measuring the inter-domain correlation between the SAQLI-J domains and the SF-36 domains. All of the SAQLI-J domains and the SAQLI-J total were found to be moderately to highly correlated with the domains of the SF-36. Moreover, the responsiveness of the SAQLI-J total measured according to the standardized response mean was found to be moderate, and the SAQLI-J was found to be more responsive than the SF-36 for detecting changes in the QOL after continuous positive airway pressure treatment. The results suggest that the SAQLI-J is a valid, reliable and responsive health-related QOL questionnaire for use in Japanese OSAHS patients.

PS43 What is Important to the Quality of Life of People with Multiple Myeloma? Implications for the Design Of Quality of Life Questionnaires

BackgroundMultiple myeloma is an incurable cancer, although recent treatment advances have improved expected survival from months to years in some cases. Increasing survival has elevated the importance of understanding and...

The Skin Cancer Quality of Life Impact Tool (SCQOLIT): a validated health‐related quality of life questionnaire for non‐metastatic skin cancers

Quality of life (QOL) issues in patients with non-metastatic skin cancer are not satisfactorily demonstrated when using existing QOL questionnaires. To construct and validate a 10 item disease-specific QOL questionnaire, the Skin Cancer Quality of Life Impact Tool (SCQOLIT), for use in patients following treatment of non-metastatic skin cancer. The SCQOLIT was constructed and administered initially to 120 patients with non-metastatic skin cancer, 60 with malignant melanoma (MM) and 60 with non-melanoma skin cancer (NMSC) following treatment, then repeated in half this cohort at seven days, and the other half at three months. Data was collected on age, gender, skin cancer type and Breslow thickness. Statistical validation was undertaken. There were 113 valid SCQOLIT responses at initial completion (54 in the MM group, and 59 in the NMSC group). Initial SCQOLIT median scores (interquartile range [IQR], range) for the two groups were 10 (12, 0-28) MM, and 4 (5, 0-19) NMSC. Amongst the cohort readministered the SCQOLIT at three months (23 in the MM group, 25 in the NMSC group) median scores (IQR, range) were 6 (6, 0-26) MM and 3 (4, 0-20) NMSC. The SCQOLIT is a validated disease-specific QOL questionnaire for use in patients following treatment of non-metastatic skin cancer. Higher SCQOLIT scores are observed in MM patients than NMSC patients, but diminish with time in the MM group. Patients with persistently elevated SCQOLIT scores merit additional attention.

Functional involvement of superior temporal sulcus in quality of life of patients with schizophrenia

The aim of this study was to investigate the neural substrate underlying quality of life (QoL) in patients with schizophrenia. Thirty-one right-handed patients were included. Patients were grouped according to ‘high' and ‘low' QoL levels. Whole-brain single photon emission computed tomography (SPECT) with 99mTc-labeled ethylcysteinate dimer (99mTc-ECD), for the measurement of voxel-based regional cerebral blood flow (rCBF), was used to compare these two groups with Statistical Parametric Mapping. Correlations of rCBF with QoL scores were secondarily explored. Nineteen of the 31 patients had a high QoL level. There was no significant difference in demographic and clinical characteristics between patients with high and low QoL levels. In comparison to patients with low QoL, those with high QoL exhibited significant bilateral temporal hypoperfusions, primarily in the superior temporal sulcus (STS). In the total group of patients, perfusion in the left STS was negatively correlated with psychological well-being, self-esteem, and sentimental life, as well as with the global index of the questionnaire. This study shows that perfusion of the STS, a brain area thought to contribute to self/other awareness and metacognition, is involved in the functional substrate underlying QoL. Our findings contribute to clarifying the scientific foundation required for a better clinical use of QoL questionnaires by suggesting that the recognition of illness-related impairment is associated with alteration of QoL.

Finding out what matters: validity of quality of life measurement in young people with ASD

Compared with other conditions there has been a lack of focus on quality of life (QoL) as an outcome measure for children and young people with Autism Spectrum Disorder (ASD). This pilot study aimed to evaluate the validity of existing QoL questionnaires for use with children with ASD aged 8-12 years. A literature review (1990-2011) identified the PedsQL (Pediatric Quality of Life Inventory) and Kidscreen as robust measures used with children with neurodevelopmental disorders. These measures were completed by 10 children and 11 parents. In addition semi-structured interviews were conducted with 10 parents and four children to explore their experience of completing the QoL questionnaires. Young people with ASD, and their parents, report lower child QoL compared with a normative sample. Framework analysis of the data highlighted six key themes which may affect the validity of generic QoL measures when administered within an ASD sample and which warrant further investigation. Our results indicate that a new condition-specific measure of QoL, grounded in ASD children's own perspectives of their lives, is needed and that such a measure should assess experiences of anxiety and access to special interests when measuring QoL of children with ASD. Active involvement of young people and their families is critical for the development of a theoretical framework for QoL within ASD, and any future development of an ASD-specific measure.

Questionnaire-based approach to assess schoolchildren's physical fitness and its potential role in exploring the putative impact of helminth and Plasmodium spp. infections in Côte d'Ivoire

BackgroundDisability weights (DWs) are important for estimating burden of disease in terms of disability-adjusted life years. The previous practice of eliciting DWs by expert opinion has been challenged. More recent approaches employed quality of life (QoL) questionnaires to establish patient-based DWs, but results are ambiguous.MethodsIn early 2010, we administered a questionnaire pertaining to physical fitness to 200 schoolchildren in Côte d'Ivoire. Helminth and Plasmodium spp. infections were determined and schoolchildren's physical fitness objectively measured in a maximal multistage 20 m shuttle run test. Associations between objectively measured and self-reported physical fitness and between self-reported physical fitness and infection status were determined. Spearman rank correlation coefficient, uni- and multivariable linear regression models adjusting for children's age and sex, ambient air temperature and humidity, Fisher's test, χ² and t-test statistics were used for statistical analysis.ResultsThe prevalence of Schistosoma haematobium, Plasmodium spp., Schistosoma mansoni, hookworm and Ascaris lumbricoides in 167 children with complete parasitological results was 84.4%, 74.9%, 54.5%, 14.4% and 1.2%, respectively. High infection intensities and multiple species parasite infections were common. In the 137 children with complete data also from the shuttle run test, we found statistically significant correlations between objectively measured and self-reported physical fitness. However, no statistically significant correlation between the children's parasitic infection status and self-reported physical fitness was identified. An attrition analysis revealed considerably lower self-reported physical fitness scores of parasitized children who were excluded from shuttle run testing due to medical concerns in comparison to parasitized children who were able to successfully complete the shuttle run test.ConclusionsOur QoL questionnaire proofed valid to assess children's physical fitness in the current study area. Reasons why no differences in self-reported physical fitness in children with different parasitic infections were found are manifold, but do not preclude the use of QoL questionnaires in the elicitation of DWs. Indeed, the questionnaire was particularly useful in assessing physical fitness of those children, who were - supposedly due to parasitic infections - unable to complete the shuttle run test. Hence, we encourage others to use QoL questionnaires to determine not only physical fitness, but also more subtle morbidities.

Quality of life issues in nonmetastatic skin cancer

Background Current knowledge of quality of life (QOL) issues affecting patients with nonmetastatic skin cancer is unsatisfactory, being based either on the use of QOL questionnaires derived from dermatology patients with predominantly benign lesions or inflammatory skin rashes, or on the use of general health QOL questionnaires. Objectives We sought to determine the impact of nonmetastatic skin cancer on patients' lives by asking such patients for their written opinions. Methods An open-ended 'Skin Cancer Quality of Life Question Sheet' was given to 100 consenting patients with nonmetastatic skin cancer [50 with malignant melanoma (MM) and 50 with nonmelanoma skin cancer (NMSC)]. Results In total, 82 'Skin Cancer Quality of Life Question Sheets' were returned complete (40 MM and 42 NMSC). There were 44 different patient concerns voiced overall in the responses. The concerns were grouped into 10 main themes. Patients with MM were significantly more likely than those with NMSC to mention 'a sense of relief/gratitude following treatment and/or a commitment to enjoy life here on' (P = 0.001), 'feelings of anxiety/depression/guilt/stress towards oneself or family/friends' (P < 0.001) and 'strengthening of emotional relationships with family and/or friends' (P = 0.02). Patients with NMSC were significantly more likely than those with MM to mention 'concern about the public's lack of understanding and recognition of skin cancer' (P = 0.02). The theme 'realization of one's mortality' was commoner among patients with MM than with NMSC, while the theme 'concern regarding possible scarring/disfigurement or the reaction of others' was commoner among patients with NMSC than with MM, although neither of these two differences was statistically significant (P = 0.07 and P = 0.11, respectively). Conclusions QOL issues expressed by patients with nonmetastatic skin cancer highlight concerns we must address during their care. A disease-specific QOL measure suitable for both nonmetastatic MM and nonmetastatic NMSC is needed. The psychosocial impact on patients with nonmetastatic MM must not be underestimated.

Does a Patient-Held Quality-of-Life Diary Benefit Patients With Inoperable Lung Cancer?

To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients. In a pragmatic randomized controlled trial, 115 patients with inoperable lung cancer were randomly assigned to receive either standard care or a structured QOL diary (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the related lung cancer module LC13) that they completed at home each week for 16 weeks. Patients were encouraged to share the QOL information with health professionals involved in their care. Changes in QOL over time (measured by the Functional Assessment of Cancer Therapy-Lung questionnaire and the Palliative Care Quality of Life Index), discussion of patient problems, and satisfaction with communication and general care were assessed at baseline and at 2 and 4 months after baseline. Analysis of QOL indicated a small but consistent difference between patients in the diary group and the standard care group. The diary group had a poorer QOL in many domains. Two different QOL summary scores (total and overall QOL) indicated a statistically significant between-group difference. No effects were found in relation to satisfaction with care, communication, or the discussion of patient problems. The regular completion of a QOL questionnaire without appropriate feedback to health care professionals and without the provision of appropriate support may have a negative impact on inoperable lung cancer patients. Further research should focus on identifying features such as feedback loops that are required for the successful and meaningful use of QOL questionnaires in routine patient care.

Journal scan

The completion of quality of life (QoL) questionnaires in the clinical setting helps patients with head and neck cancer to concentrate on and communicate their concerns to their doctors, according to this study, co-authored by clinicians in Birmingham, UK and Auckland, New Zealand. The authors imply that these findings about the usefulness of the tool could and should inform and influence the use of QoL questionnaires in routine practice, which has hitherto been reported as reluctant to realise their potential, with less than a third of specialist practitioners actually conducting QoL assessments.

The European Organisation for Research and Treatment of Cancer (EORTC) translation procedure for standardized quality of life questionnaires

16033 Background: The EORTC Quality of Life (QoL) Group has developed a modular approach to QoL measurement for use in clinical trials in cancer. Questionnaires are used in international trials and standardized translation procedures are therefore required. This report summarizes the EORTC translation procedure, its accomplishments and translation problems. Methods: Translations follow a forward-backward procedure, independently carried out by two native-speakers of the target language. Discrepancies are arbitrated by a third consultant, and solutions are reached by consensus. Translated questionnaires undergo pilot-testing. Suggestions (by patients and users) are incorporated into the final questionnaire version. Most translations are performed by professional translators. The translation procedure is managed and supervised by the Translation Committee within the EORTC QoL Group. Results: To date, the core EORTC QoL questionnaire, the QLQ-C30, has been translated and validated into 62 languages, with a further 12 translations in progress. Translations include all major Western languages, East European languages, Asian languages and also remote languages, such as Xhoza (Africa).The validated, condition-specific questionnaire modules have been translated in up to 37 languages. The following major translation problems were encountered: lack of expressions for specific symptoms in various languages, the quest for formal versus informal versions, recent spelling reforms in several European countries, and different weights of social issues between Western and Eastern cultures. The EORTC measurement system is now registered for use in over 9000 clinical studies in 80 countries worldwide. Conclusions: The EORTC provides a strong infrastructure and methodology to produce high quality translations of their QoL questionnaires for use in international clinical trials. Translation problems have been identified and it will be an important topic for future research to specify whether these problems arise out of procedural/methodological shortcomings or are due to subtle cross-cultural differences in concepts of health, illness and QoL. No significant financial relationships to disclose.

Mesurer la qualité de vie : effet de mode ou véritable critère de jugement ?

During 20 last years, there has been an exponential growth in the literature related to quality of life (QoL). The usual indicators of results are not always responsive to new strategies or new systems of care organization. While assessment of QoL by patients and by the medical community is an old concern, the issue of standardized instruments is more recent. Despite the need, the use of QoL questionnaires remains rare because of the lack of sufficiently dedicated tools. In the specific field of motoneuron diseases, a search of the literature should be helpful to clarify the definition of quality of life. It should also be helpful in determining the limits of the debate on quantification of an impression considered to be subjective. The goal is to clarify methods for standardizing QoL evaluation, to specify nosographic notions affecting the choice of measuring instruments, to recall the prerequisite of validation before use, and finally to specify the fields of application of such tools. Thus in the field of motoneuron diseases, recognizing the limitations of QoL instruments should enable a more enlightened approach to overall assessment of the burden of these diseases.

Clinicians' perspective on quality of life assessment in paediatric clinical practice

This study was undertaken to investigate paediatric clinicians' views on and use of quality of life (QoL) assessment in clinical practice. A survey was conducted among members of the Dutch Paediatric Association via e-mail. Over half of the 303 respondents (57%) believed that it was possible to use QoL questionnaires in clinical practice. The majority indicated that assessing QoL was beneficial and that it was especially necessary to assess QoL in children with a chronic disease (82%). Although only a minority (17%) currently used QoL questionnaires, most respondents would want to use QoL questionnaires in the future (76%). Obstacles that prevent the use of QoL questionnaires are the extra time needed for assessment, the unavailability of standardized questionnaires and insufficient knowledge about QoL. This survey shows that paediatric clinicians are positive towards QoL assessment, but that certain obstacles prevent the use of questionnaires. Thus, to facilitate future use, QoL questionnaires need to be developed from the perspective of the paediatrician. This means that they need to be developed for clinical use and brought to the attention of the paediatric health care community, demonstrating their validity to child health care.

Clinicians' perspective on quality of life assessment in paediatric clinical practice

Aim: This study was undertaken to investigate paediatric clinicians' views on and use of quality of life (QoL) assessment in clinical practice. Methods: A survey was conducted among members of the Dutch Paediatric Association via e-mail. Results: Over half of the 303 respondents (57%) believed that it was possible to use QoL questionnaires in clinical practice. The majority indicated that assessing QoL was beneficial and that it was especially necessary to assess QoL in children with a chronic disease (82%). Although only a minority (17%) currently used QoL questionnaires, most respondents would want to use QoL questionnaires in the future (76%). Obstacles that prevent the use of QoL questionnaires are the extra time needed for assessment, the unavailability of standardized questionnaires and insufficient knowledge about QoL. Conclusion: This survey shows that paediatric clinicians are positive towards QoL assessment, but that certain obstacles prevent the use of questionnaires. Thus, to facilitate future use, QoL questionnaires need to be developed from the perspective of the paediatrician. This means that they need to be developed for clinical use and brought to the attention of the paediatric health care community, demonstrating their validity to child health care.