Quality of Life in Survivors of a Primary Bone Tumour: A Systematic Review

Purpose. We conducted a systematic search of published literature, to assess (i) quality of life (QoL) for survivors of a bone tumour compared with the normal population; (ii) QoL implications following amputation, successful or failed limb salvage; (iii) adaptation of young children to amputation compared with older children or adolescents

‘He Never Liked Sport Anyway’ - Mother's Views of Young People Coping With a Bone Tumour in the Lower Limb

Purpose: Treatment for a bone tumour can compromise quality of life (QOL), especially for young patients. We used qualitative methods to assess mothers' views of patients' experiences and their coping strategies at approximately 6 months after diagnosis (T1: n=12) and 12–18 months later (T2: n=11)

Motivos para hacer ejercicio

El propósito de esta investigación es ilustrar parte de las diversas razones por las cuales las personas hacen ejercicio físico, particularmente en su edad adulta, sobre todo por lo que se refiere a temas que puede ser interesante subrayar en futuras campañas. La muestra consistió en 2 grupos: el primero con 165 sujetos del personal no académico de la Universidad de Exeter, y el segundo con 58 mujeres que asistían a clases de gimnasia en un centro deportivo local. Los dos grupos contestaron a un cuestionario diseñado para medir varios aspectos de niveles de actividad física, importancia percibida de las diferentes razones para hacer ejercicio, y autopuntuación relativa al nivel de actividad y algunos detalles personales. Los resultados de este estudio han mostrado que hay diferencias entre hombres y mujeres, no tanto en la suma de ejercicio total que hacen, sino más bien, en términos de sus razones para hacer ese ejercicio, y también en cuanto a sus autopuntuaciones en relación con los niveles de actividad física. Los otros resultados principales están referidos a las diferencias entre aquellos que asisten o que no asisten a deportes organizados o a clases de ejercicio físico en términos de sus razones para hacer ejercicio. Los resultados apuntan en general a la deseabilidad de una aproximación multifactorial a la educación sanitaria dirigida a promocionar una participación en niveles más altos de ejercicio por parte de la población adulta.The purpose of this research is to illustrate part of the variety of reasons for people engaging in physical exercise, particularly in middle adulthood, so as to point to themes that may be worth emphasing in future campaigns. The sample consisted of two groups: the first one consisted of 165 subjects from non-academic staff of the University of Exeter, and the second one consisted of 58 women attending exercise classes at a local sports centre. 8oth of two groups answered a questionnaire designed to measure various aspects of physical activity levels, perceived importance of different reasons for exercise, self-ratings related to activity level and some personal details. The findings of this study have shown that there are differences between men and women, not so much in the amount of exercise they took, but in terms of their reasons for doing so, and their self-ratings in relation to levels of physical activity. The other main findings of note relate to the differences between those attending or not attending organised sports or exercise in terms of their reasons for taking exercise. The results therefore point to the desirability of a multifaceted approach to health education aimed at promoting higher levels of exercise participation among the adult population

Quality of Life in Children Following Treatment for a Malignant Primary Bone Tumour Around the Knee

Purpose. We report on the quality of life following treatment for a malignant primary bone tumour around the knee in skeletally immature children

Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

Background: Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods: This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results: A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion: The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report

How do men in the United Kingdom decide to dispose of banked sperm following cancer treatment?

Current policy in the UK recommends that men bank sperm prior to cancer treatment, but very few return to use it for reproductive purposes or agree to elective disposal even when their fertility recovers and their families are complete. We assessed the demographic, medical and psychological variables that influence the decision to dispose by contacting men (n = 499) who banked sperm more than five years previously, and asked them to complete questionnaires about their views on sperm banking, fertility and disposal. From 193 responses (38.7% response rate), 19 men (9.8%) requested disposal within four months of completing the questionnaire. Compared with men who wanted their sperm to remain in storage, they were significantly more confident that their fertility had recovered (OR = 1.78, 95% CI = 1.05-3.03, p = 0.034), saw fertility monitoring (semen analysis) as less important (OR = 0.61, 95% CI = 0.39-0.94, p = 0.026), held more positive attitudes to disposal (OR = 5.71, 95% CI = 2.89-11.27, p < 0.001), were more likely to have experienced adverse treatment side-effects (OR = 4.37, CI = 1.61-11.85, p = 0.004) and had less desire for children in the future (OR = 0.41, 95% CI = 0.26-0.64, p < 0.001). Information about men's reasons to dispose of banked sperm may be helpful in devising new strategies to encourage men to engage with sperm banking clinics and make timely decisions about the fate of their samples

Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scales

BACKGROUND: In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. However the relationship between child self and parent proxy-reports has been shown to be poor in some circumstances. Additionally the most appropriate statistical method for comparing ratings between child and parent proxy-reports has not been clearly established. The objectives of this study were to assess the: 1) agreement between child and parent proxy-reports on an established child QOL measure (the PedsQL™) using two different statistical methods; 2) effect of chronological age and domain type on agreement between children's and parents' reports on the PedsQL™; 3) relationship between parents' own well-being and their ratings of their child's QOL. METHODS: One hundred and forty-nine healthy children (5.5 – 6.5, 6.5 – 7.5, and 7.5 – 8.5 years) completed the PedsQL™. One hundred and three of their parents completed these measures in relation to their child, and a measure of their own QOL (SF-36). RESULTS: Consistency between child and parent proxy-reports on the PedsQL™ was low, with Intra-Class correlation coefficients ranging from 0.02 to 0.23. Correlations were higher for the oldest age group for Total Score and Psychosocial Health domains, and for the Physical Health domain in the youngest age group. Statistically significant median differences were found between child and parent-reports on all subscales of the PedsQL™. The largest median differences were found for the two older age groups. Statistically significant correlations were found between parents' own QOL and their proxy-reports of child QOL across the total sample and within the middle age group. CONCLUSION: Intra-Class correlation coefficients and median difference testing can provide different information on the relationship between parent proxy-reports and child self-reports. Our findings suggest that differences in the levels of parent-child agreement previously reported may be an artefact of the statistical method used. In addition, levels of agreement can be affected by child age, domains investigated, and parents' own QOL. Further studies are needed to establish the optimal predictors of levels of parent-child agreement

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington’s disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington’s disease; living with the disease; other people’s knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe

Why don't some men with banked sperm respond to letters about their stored samples?

Long-term storage of banked sperm, especially when it is not needed, for reproductive purposes, is costly and poses practical problems for sperm banks. For sperm banks to function efficiently, men must understand the implications of unnecessary storage, and make timely decisions about disposal of their own samples. Men who bank sperm prior to cancer treatment are routinely offered follow-up consultations to test their fertility, update consent and, where necessary, expedite referral for Assisted Conception. Yet sperm banks report that men do not respond to letters, suggesting samples are stored needlessly. We conducted semi-structured interviews with six men with a history of not responding to letters, to document reasons for non-response. Interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Men's reasons for not responding are a complex interplay between past, present and future perspectives. In terms of their past, information is important on diagnosis, because men must understand that fertility can change after treatment. Present and future concerns focus on fears of being told fertility has not recovered and being pressured to dispose of banked sperm. The challenge is to devise invitation letters that address men's concerns while offering them tangible benefits and peace of mind

How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 Generic Core Scales

BACKGROUND: The last decade has evidenced a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures in an effort to improve pediatric patient health and well-being and determine the value of healthcare services. The emerging paradigm shift toward patient-reported outcomes (PROs) in clinical trials has provided the opportunity to further emphasize the value and essential need for pediatric patient self-reported outcomes measurement. Data from the PedsQL™ Database(SM )were utilized to test the hypothesis that children as young as 5 years of age can reliably and validly report their HRQOL. METHODS: The sample analyzed represented child self-report age data on 8,591 children ages 5 to 16 years from the PedsQL™ 4.0 Generic Core Scales Database(SM). Participants were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 2,603, 30.3%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 5,988, 69.7%). RESULTS: Items on the PedsQL™ 4.0 Generic Core Scales had minimal missing responses for children as young as 5 years old, supporting feasibility. The majority of the child self-report scales across the age subgroups, including for children as young as 5 years, exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL™ scale and summary score, across age subgroups, including children as young as 5 years, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range. CONCLUSION: The results demonstrate that children as young as the 5 year old age subgroup can reliably and validly self-report their HRQOL when given the opportunity to do so with an age-appropriate instrument. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which children can provide reliable and valid responses across age categories