Introduction: Each year 1200-1300 patients are diagnosed with head neck cancer. Treatment that involves radiotherapy can cause severe side effects for example trismus that affects quality of life. Purpose: To study health-related quality of life in patients who have undergone radiation treatment for head and neck cancer and participated in a intervention group who received training intended to prevent trismus or in a control group who received standard treatment. Method: This is a prospective study in which data is collected from 66 patients participating in a randomized study aiming to evaluate a training program to prevent trismus. Thirty three participated in the intervention group and thirty three in the control group. Both patient groups assessed health related quality of life (HRQOL) with EORTC QLQ C30 and QLQ-H&N35, at start and end of the radiation treatment, and at 3 and 6-months after completing radiation treatment. Results: There is no difference between the intervention and control groups regarding symptoms, functional status and global health, except for intake of nutritional supplements.  For both groups almost all scales measuring HRQOL deteriorated under the radiation treatment. However, 3 and 6 months after end of radiotherapy HRQOL had improved and had returned to the baseline values. The only exceptions were dry mouth, sticky saliva, problems with social eating, senses and physical ability. Conclusion: Radiation therapy for head and neck cancer affects patients HRQOL both in the short and long term. Medical staff needs strategies to manage patients ' functional and symptomatic deterioration throughout the treatment period and try to prevent or relieve the symptoms that may still remain several months after radiotherapy.

Fundamentação e Objetivo: A epilepsia é a doença neurológica mais comum em crianças. A avaliação da qualidade de vida destas crianças é importante para otimizar o tratamento delas. É importante para obter os pontos de vista das próprias crianças e seus pais. No entanto, existem poucos instrumentos que avaliem a qualidade de vida através da visão das crianças e dos seus pais. O objetivo deste estudo foi desenvolver e validar uma nova ferramenta para avaliação da qualidade de vida em crianças com epilepsia através de seus pais e dos pacientes. Material e Métodos: Baseada no trabalho anterior de Arunkumar e colaboradores, foi elaborada uma escala de múltipla escolha com 20 questões independentes para as crianças e seus pais: A Quality-of-Life in Pediatric Epilepsy Scale (QLPES). A análise fatorial com rotação VARIMAX foi usada para identificar possíveis áreas para as 20 questões propostas e alfa de Cronbach foi utilizado para testar a consistência das escalas. As respostas dadas pelos pacientes e seus pais ou cuidadores foram correlacionadas com frequência e gravidade das crises e com outras variáveis relacionadas com a epilepsia. Resultados: No total, 171 pacientes e seus pais participaram deste estudo. Setenta e quatro pacientes (43,3%) eram do sexo feminino, com médias de 13,3 (DP = 3,0) anos de idade e de 5,1 (DP = 3,1) anos de escolaridade. O alfa de Cronbach para cada domínio isolado sugerido pela analise fatorial foi abaixo de 0,7 para cada grupo. Entretanto, o alfa de Cronbach para todas as perguntas na escala dos pais foi de 0,83, e de 0,74 para as crianças. Para os pais ou cuidadores, as pontuações do QLPES foram menores para as mães/cuidadoras, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para crianças com mais tempo de epilepsia, com maior duração de crises, ou aquelas com maior número de crises. Para as crianças, a pontuação QLPES foi menor para pacientes do sexo feminino, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para aquelas com maior frequência de crises, e para crianças com EEG normal. Conclusão: A QLPES apresenta validade interna, consistência interna, confiabilidade teste-reteste e boa sensibilidade. A QLPES é um instrumento útil, preciso, rápido e fácil de usar, que reflete adequadamente a forma como a epilepsia afeta a qualidade de vida de crianças/adolescentes, assim como ele reflete como a epilepsia pediátrica afeta a qualidade de vida dos pacientes na perspectiva de seus pais ou cuidadores. / Background and Purpose: Epilepsy is the most common neurological condition in children. The evaluation of the quality of life of these children is important to optimize the treatment of them. It is important to obtain the views of the children themselves and of their parents. However, there are few scales assessing quality of life through both. The purpose of this study was to develop and validate a new parent- and patient- tool for evaluating health-related quality-of-life in pediatric epilepsy. Design and Methods: Based on previous work of Arunkumar and colleagues, we created a multiple choice scale with 20 independent questions for children and their parents. The Quality-of-Life in Pediatric Epilepsy Scale (QLPES). Factor analysis with VARIMAX rotation was used to identify possible areas for the 20 proposed questions, and Cronbach's alpha was used to test the scale’s consistency. The answers given by patients and their parents or caregivers were correlated with frequency and severity of the seizures and with other epilepsy-related variables. Results: A total of 171 patients and their parents participated in this study. Seventy four (43.3%) patients were female, with mean of 13.3 (SD=3.0) years of age and 5.1 (SD=3.1) years of schooling. The Cronbach's alpha of isolated domains suggested by the factor analysis were less than 0.7 for each group. However, alpha Cronbach for all the questions in the parents’ scale was 0.83 and 0.74 for children. For parents or caregivers, QLPES scores were lower for females responders, for children using two or more antiepileptic drugs, for children with longer time of epilepsy, longer seizure duration, or those with higher number of seizures. For children, QLPES scores were lower for female patients, for children using two or more antiepileptic drugs, for those with higher frequency of seizures, and for children with normal EEG. Conclusion: QLPES exhibits internal validity, internal consistency, test–retest reliability, and good sensitivity. QLPES is a useful, accurate, brief and easy to use instrument that adequately reflects the way epilepsy affects the quality of life of children/adolescents, as well as it reflects how pediatric epilepsy affects quality of life in the perspective of their parents or caregivers.

Fundamentação e Objetivo: A epilepsia é a doença neurológica mais comum em crianças. A avaliação da qualidade de vida destas crianças é importante para otimizar o tratamento delas. É importante para obter os pontos de vista das próprias crianças e seus pais. No entanto, existem poucos instrumentos que avaliem a qualidade de vida através da visão das crianças e dos seus pais. O objetivo deste estudo foi desenvolver e validar uma nova ferramenta para avaliação da qualidade de vida em crianças com epilepsia através de seus pais e dos pacientes. Material e Métodos: Baseada no trabalho anterior de Arunkumar e colaboradores, foi elaborada uma escala de múltipla escolha com 20 questões independentes para as crianças e seus pais: A Quality-of-Life in Pediatric Epilepsy Scale (QLPES). A análise fatorial com rotação VARIMAX foi usada para identificar possíveis áreas para as 20 questões propostas e alfa de Cronbach foi utilizado para testar a consistência das escalas. As respostas dadas pelos pacientes e seus pais ou cuidadores foram correlacionadas com frequência e gravidade das crises e com outras variáveis relacionadas com a epilepsia. Resultados: No total, 171 pacientes e seus pais participaram deste estudo. Setenta e quatro pacientes (43,3%) eram do sexo feminino, com médias de 13,3 (DP = 3,0) anos de idade e de 5,1 (DP = 3,1) anos de escolaridade. O alfa de Cronbach para cada domínio isolado sugerido pela analise fatorial foi abaixo de 0,7 para cada grupo. Entretanto, o alfa de Cronbach para todas as perguntas na escala dos pais foi de 0,83, e de 0,74 para as crianças. Para os pais ou cuidadores, as pontuações do QLPES foram menores para as mães/cuidadoras, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para crianças com mais tempo de epilepsia, com maior duração de crises, ou aquelas com maior número de crises. Para as crianças, a pontuação QLPES foi menor para pacientes do sexo feminino, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para aquelas com maior frequência de crises, e para crianças com EEG normal. Conclusão: A QLPES apresenta validade interna, consistência interna, confiabilidade teste-reteste e boa sensibilidade. A QLPES é um instrumento útil, preciso, rápido e fácil de usar, que reflete adequadamente a forma como a epilepsia afeta a qualidade de vida de crianças/adolescentes, assim como ele reflete como a epilepsia pediátrica afeta a qualidade de vida dos pacientes na perspectiva de seus pais ou cuidadores. / Background and Purpose: Epilepsy is the most common neurological condition in children. The evaluation of the quality of life of these children is important to optimize the treatment of them. It is important to obtain the views of the children themselves and of their parents. However, there are few scales assessing quality of life through both. The purpose of this study was to develop and validate a new parent- and patient- tool for evaluating health-related quality-of-life in pediatric epilepsy. Design and Methods: Based on previous work of Arunkumar and colleagues, we created a multiple choice scale with 20 independent questions for children and their parents. The Quality-of-Life in Pediatric Epilepsy Scale (QLPES). Factor analysis with VARIMAX rotation was used to identify possible areas for the 20 proposed questions, and Cronbach's alpha was used to test the scale’s consistency. The answers given by patients and their parents or caregivers were correlated with frequency and severity of the seizures and with other epilepsy-related variables. Results: A total of 171 patients and their parents participated in this study. Seventy four (43.3%) patients were female, with mean of 13.3 (SD=3.0) years of age and 5.1 (SD=3.1) years of schooling. The Cronbach's alpha of isolated domains suggested by the factor analysis were less than 0.7 for each group. However, alpha Cronbach for all the questions in the parents’ scale was 0.83 and 0.74 for children. For parents or caregivers, QLPES scores were lower for females responders, for children using two or more antiepileptic drugs, for children with longer time of epilepsy, longer seizure duration, or those with higher number of seizures. For children, QLPES scores were lower for female patients, for children using two or more antiepileptic drugs, for those with higher frequency of seizures, and for children with normal EEG. Conclusion: QLPES exhibits internal validity, internal consistency, test–retest reliability, and good sensitivity. QLPES is a useful, accurate, brief and easy to use instrument that adequately reflects the way epilepsy affects the quality of life of children/adolescents, as well as it reflects how pediatric epilepsy affects quality of life in the perspective of their parents or caregivers.

Submitted by Renata Lopes (renatasil82@gmail.com) on 2017-06-19T17:32:57Z No. of bitstreams: 1 priscilaalmeidabarbosa.pdf: 4564248 bytes, checksum: c56ec8ffae2bff3e6da770300f357c0e (MD5) / Approved for entry into archive by Adriana Oliveira (adriana.oliveira@ufjf.edu.br) on 2017-06-29T12:31:03Z (GMT) No. of bitstreams: 1 priscilaalmeidabarbosa.pdf: 4564248 bytes, checksum: c56ec8ffae2bff3e6da770300f357c0e (MD5) / Made available in DSpace on 2017-06-29T12:31:03Z (GMT). No. of bitstreams: 1 priscilaalmeidabarbosa.pdf: 4564248 bytes, checksum: c56ec8ffae2bff3e6da770300f357c0e (MD5) Previous issue date: 2014-02-21 / CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / O câncer de mama é o mais frequente entre as mulheres no Brasil, com grande importância epidemiológica e relevante impacto social, tornando-se foco da atenção na saúde dado as conseqüências que o diagnóstico e o tratamento acarretam na qualidade de vida destas mulheres. Avaliar a qualidade de vida relacionada à saúde (QVRS) de mulheres tratadas cirurgicamente de CA de mama no Hospital Maria José Baeta ReisAsconcer, na cidade de Juiz de Fora, pólo de referencia em tratamento oncológico. Foram avaliadas 121 mulheres com câncer de mama atendidas em unidade de tratamento oncológico de referência do sistema público, sendo coletados dados de prontuários e realizada entrevista e exame físico no ato da consulta. A entrevista compreendeu na aplicação dos instrumentos de qualidade de vida, European Organization for Research and Treatment of Cancer Breast Cancer-Specific Quality of Life Questionnaire (EORTC QLC 30 BR-23) e o questionário de sintomas e funções do MMSS, Disability Arm Shoulder and Hand (DASH), que caracterizou a funcionalidade no presente estudo. Os escores médios do EORTC QLC 30 BR-23 e total do DASH foram considerados como variáveis dependentes, e como variáveis independentes as características sócio-demográficas, clínicas, tratamento e tumor. As variáveis foram expressas em média e desvio padrão; e a análise estatística constou dos testes Kruskal Wallis, Mann-Whitney e teste t de Student, com nível de significância de 5%, sendo, então, construído modelo de regressão linear múltipla. Para construção do banco de dados e análise foi usado o SPSS 19. Da população do estudo, 94,6% das mulheres tem idade superior a 50 anos; 52% vivem sem companheiro; 66% possuem grau de escolaridade baixo e 71,9% relataram sua ocupação atual como do lar ou aposentadas; cerca de 63,5% estavam acima do peso; 76% das mulheres apresentaram estadiamento clínico avançado III-IV; 65,3% foram submetidas à cirurgia conservadora e em 31,5% foi realizada pesquisa de linfonodo sentinela; 81,7% receberam quimioterapia, 85% foram submetidas à radioterapia e 87,5 % estavam em uso de hormonioterapia. O linfedema foi diagnosticado em 7,4% da população. Os valores médios do EORTC QLC 30 BR23 demonstraram uma tendência para boa QVRS, sendo a escala funcional a mais comprometida com as piores médias de escores observadas. A população teve bom desempenho funcional de MMSS, representado pelo baixo escore total do DASH. Houve significância estatística entre a escala de sintomas do instrumento e as mulheres obesas (p = 0,029 e p = 0,015, respectivamente); que realizaram radioterapia ajduvante (p = 0,052), que tiveram maior número de linfonodos dissecados (p = 0,024). E entre o IMC ≥ 30 e a funcionalidade (p = 0, 001). As percepções subjetivas influenciaram todos os domínios do EORTC QLC 30 BR23 (p < 0,01), bem como a funcionalidade (p < 0,01). Após controle pela variável mão funcional demonstraram serem variáveis explicativas da QVRS o IMC, reconstrução mamária, sensação de peso no braço, redução da ADM do ombro e sensação de blusa apertada; e seqüencialmente o IMC, trabalho ativo, restrição ADM ombro e sensação de blusa apertada para a funcionalidade. Nesta amostra, apesar das percepções subjetivas terem sido preditoras de maior influencia negativa na QVRS, a presença de linfedema e queixas auto relatadas não parecem influenciar a funcionalidade dos MMSS, que teve bom desempenho funcional. / Breast cancer is the most common among women in Brazil, with great epidemiological importance and significant social impact, becoming the focus of attention given the health consequences that entail the diagnosis and treatment on quality of life of these women. Assessing quality of life related to health (HRQOL) in women treated surgically for breast CA in Maria José Baeta Reis-Asconcer Hospital in the city of Juiz de Fora, pole reference in cancer treatment. We evaluated 121 women attended at a cancer treatment referral unit in the public health system, collecting data from medical records and doing interviews and physical exams as part of the consultation. The interview included the application of quality of life measurements, the European Organization for Research and Treatment of Cancer, Breast Cancer-Specific Quality of Life Questionnaire (EORTC QLQ-C30 BR-23), and the morbidity of upper limb physical function and symptoms questionnaire, Disabilities of the Arm, Shoulder, and Hand (DASH), which characterized functionality in the present study. The EORTC QLQ-C30 BR-23 mean scores and DASH outcomes were considered as dependent variables, and the independent variables were socio-demographic, clinical, treatment, and tumor characteristics. The variables were expressed in terms of mean and standard deviation; and the statistical analysis consisted of Kruskal Wallis, Mann-Whitney, and Student's t tests, with a significance level of 5%, followed by the construction of a multiple linear regression model. SPSS 19 was used for database construction and analysis. Of the study population, 94.6% of the women were over 50 years of age, 52% lived without a partner, 66% had a low level of education, and 71.9% reported their current occupation as homemaker or retired; about 63.5% were overweight; 76% of the women had advanced clinical stages, III-IV, 65.3% had undergone conservative surgery, and on 31.5%, sentinel lymph node research had been conducted; 81.7% had received chemotherapy, 85% had undergone radiotherapy, and 87.5% were using hormone therapy. Lymphedema was diagnosed in 7.4% of the population. The mean values of the EORTC QLQ-C30 BR-23 showed a trend for good HRQOL, the functional scale being the most impaired, having the worst mean scores observed. The population had good upper limb functional performance, represented by low total DASH scores. There was statistical significance between the instrument's scale of symptoms and the women who were obese (p = 0.029 and p = 0.015, respectively), those who underwent adjuvant radiotherapy (p = 0.052), and those who had a higher number of lymph node dissections (p = 0.024). And between BMI ≥ 30 and functionality (p = 0.001). Subjective perceptions influenced all areas of the EORTC QLQ-C30 BR-23 (p < 0.01), as well as functionality (p < 0.01). After controlling for the variable, functional hand, what proved to explain HRQOL were the variables BMI, breast reconstruction, a heavy feeling in the arm, reduced range of motion in the shoulder, and a tight shirtsleeve sensation; and in turn, BMI, active work, limited shoulder range of motion, and a tight shirt-sleeve feeling, for functionality. In this sample, although the subjective perceptions were predictors of greater negative influence on HRQOL, the presence of lymphedema and self-reported complaints does not seem to influence the functionality of the upper limbs, which had good functional performance.

Polycystic Ovary Syndrome (PCOS) is one of the most common endocrine disorders amongst women, estimated to affect one out of 10 women. Symptoms include infertility, obesity, alopecia, acne, hirsutism and menstrual irregularities. Women with the syndrome are also more likely to experience co-morbid physical and psychological conditions such as diabetes, heart disease, endometrial cancer and also depression and anxiety. PCOS has also been found to have a negative impact on quality of life. This thesis aimed to further understanding, and improve quality of life of women with PCOS in the UK. To achieve this, the thesis aimed to investigate and identify how women with PCOS in the UK perceive and define their quality of life and to further understanding of the day-to-day experience of living with PCOS. Moreover, in order to measure quality of life, it aimed to develop and validate a UK disease-specific quality of life measure for women with PCOS. It also aimed to identify, develop and test a pilot intervention to increase quality of life in women with PCOS. To achieve these aims a mixed-methods approach was taken employing a variety of data generation and collection methods including: photovoice, online Skype™ interviews; LimeSurvey and Qualtrics. The findings of this thesis emphasise that PCOS has a negative impact on quality of life; encompassing psychological, social, environmental, and physical domains of quality of life. Women with PCOS who experienced the symptoms of infertility, hirsutism, weight, alopecia, skin discolouration, skin tags and mood swings had significantly lower scores of overall quality of life than those women who did not experience the symptoms. In addition, those women with PCOS who had a diagnosis of anxiety and/or depression had reduced quality of life. The dissemination of these findings will enable health care professionals to better understand the experience of living with PCOS and its impact on quality of life. Moreover, this thesis identifies many areas for future research which will enable a better understanding of the impact of PCOS on quality of life. Finally, this thesis makes recommendations for clinical practice which include improvement of support from health care professionals for women with PCOS in order to help them better manage their symptoms, and therefore improve their overall quality of life.

The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Long-term stress can lead to some form of chronic stress reaction. In study one, fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. Parents were offered either a CBT or a mindfulness programme. Both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, fears concerning future cancer recurrence and late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction. / The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions who suffer from fears, stress and burnout; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Research on parents of children with chronic conditions has shown that this parent group frequently suffers from psychological problems. Long-term stress can lead to some form of chronic stress reaction. In study one, parents of children with brain tumours were asked to rate the extent to which they experienced a set of specific fears related to their child’s brain tumour and its treatment. Fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. After a waiting list control period, parents were offered either a CBT or a mindfulness programme. After eight group therapy sessions, both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, many parents of children with chronic conditions suffer from stress-related mental illness and need targeted interventions for their own problems. The present research concludes that fears concerning future cancer recurrence and concerning late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction in parents of children with chronic conditions.

Bakgrund: Prevalens av fetma ökar i världen. Fetma har både fysisk och mentalpåverkan på individen och förknippas med samsjukdomar såsom diabetes, hjärtochkärlsjukdomar, depression och dåligt självförtroende. Livskvalitet påverkas avfetma.Syfte: Att sammanställa studier som har undersökt samband mellan fetma ochlivskvalitet.Metod: En systematisk litteraturstudie baserad på artiklar med kvantitativ ansats.Tre databaser användes till litteratursökningen; PubMed, CINAHL och PsycInfo.Efter kvalitetsgranskning sammanställdes resultat utifrån de fyra mestförekommande mätinstrumenten för livskvalitet; IWQOL-Lite, EQ-5D, HADSsamt SF-36/SF-12.Resultat: Personer med fetma upplever sämre livskvalitet, särskilt inom denfysiska komponenten av HRQOL. Inget uppenbart samband mellan den mentalakomponenten och fetma kunde påvisas. Prevalens av ångest och depression blandpersoner med fetma observerades.Konklusion: Det är viktigt för sjuksköterskan att vara uppmärksam på hurpersoner med fetma upplever livskvalitet för att kunna rikta sinaomvårdnadsåtgärder. / Background: Obesity is increasing on a global scale. Obesity has both physicaland mental consequences for the individual and is associated with co-morbiditiessuch as diabetes, coronary diseases, depression, and low self-esteem. Quality oflife is affected by obesity.Aim: To compile studies that have examined how obese people experience qualityof life.Method: A systematic review based on quantitative studies. Three databases wereused for the literature search; PubMed, CINAHL and PsycInfo. After qualitycontrol, results were compiled based on the four most commonquestionnaires/surveys; IWQOL-Lite, EQ-5D, HADS and SF-36/SF-12.Results: Obese people experience impaired quality of life, especially in thephysical component of HRQOL. No obvious relation between the mentalcomponent and obesity was found. Prevalence of anxiety and depression wasobserved in obese people.Conclusion: It is important for nurses to be aware of how obese people experiencequality of life, so they can tailor their nursing actions.

No description available.

Background and Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the quality adjusted life year or QALY, which incorporates time spent in a health condition and Health-Related Quality of Life (HRQoL) into the measure. This is of increasing importance in Low Income Countries (LIC) where programmes have been adopted and implemented to address the high burden of child mortality. The ‘first 1000 days’ is one such initiative which has been adopted by the WHO to improve nutritional support, health care and social support for both the mother and child. One of the aims is to improve quality of life during this vulnerable period. As there is currently no appropriate measure of HRQoL in this age group, we set out to develop a valid and reliable, HRQoL instrument for children from 1 month to 3 years old, amenable to the elicitation of preference weights. Methods: The new HRQoL instrument, HRQoL-6D-IT, was based firstly on a mapping review of HRQoL measures for children. The next stage involved eliciting options through cognitive review from caregivers of very young children regarding HRQoL dimensions included in the EQ-5D-Y an existing validated HRQoL measure for older children. The care-givers were requested to identify items to be considered for inclusion, the wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were then assessed through a Delphi study with experts in the field. These items were further reduced through subsequent testing of items and retesting of a preliminary measure. The final items on the HRQoL-6D-IT included: movement, play, pain, relationships, communication and eating and, apart from pain, the descriptors referenced the behaviour of the child to age appropriate behaviour. The HRQoL-6D-IT was then tested for validity and reliability in a group of acutely-ill (AI), chronically-ill (CI) and typically developing (TD) children in two provinces in South Africa: Western and Eastern Cape. Results: The methodology used to identify candidate items was rigorous and yielded items which were developed to be observable with dimension descriptors referring to ‘age appropriate behaviour’. Caregivers were able to reliably report on HRQoL of their very young children from age 1-36 months. The content validity had been established during the development of the instrument. Concurrent validity of the different items (dimensions) was tested between the HRQoL-6D-IT and relevant items from the ASQ, FLACC and NIPS pain scale and Diet History.

No description available.