Social disparities in musculoskeletal disorders and associated mental malaise: findings from a population-based survey in France.

AIMS: Various types of musculoskeletal disorders (MSDs) have comorbid mental disorders, which may in turn have a negative influence on disease course and role impairment, but the contribution of social factors to this type of comorbidity is a much under-researched area. This study investigates whether there is a socially patterned association of MSDs with different dimensions of mental malaise. METHODS: The sample included 3,368 economically active participants aged 18-64 years, randomly selected from the Lorraine region in north-eastern France. Information was provided through a post-mailed questionnaire on fatigue, sadness/depression (Duke questionnaire) and cognitive disability during the last eight days. RESULTS: MSDs were significantly more prevalent in manual workers, clerks and other occupations than in upper and intermediate professionals, and similar occupational disparities were found for cognitive disability, fatigue and sadness/ depression. Stratifying the sample, we found the occupational disparities in cognitive disability to be much stronger among participants suffering from MSDs than among participants not suffering from MSDs, and the occupational disparities in fatigue and sadness/depression to be limited to the subsample of subjects suffering from MSDs. CONCLUSIONS: The findings demonstrate that the association of MSDs with mental malaise is much stronger in the lower occupational groups than in the higher groups. Given that psychological factors are implicated in disease prognosis and in the development of disabilities, awareness of the social dimension of the association and treatment of the comorbid mental disorders could open a promising avenue for reducing social inequalities in disability related to MSDs.

Quality of life of children and adolescents after kidney or liver transplantation: child, parents and caregiver's point of view.

A cross-sectional study was performed to assess quality of life (QoL) after kidney or liver transplantation during childhood. Self-questionnaires explored children, adolescent and parent QoL. Seventy-five transplant children, 36 transplant adolescents, 67 mothers, 34 fathers and 67 caregivers filled out the questionnaires; they were compared with a reference population. Children reported a rather good QoL, but their extra-family involvement appeared not as satisfactory as that of the reference population children. Adolescents reported a very high QoL when completing the structured format scale; however, their responses to open-ended questions showed qualitative differences compared with those of a reference population: they expressed concern about their body or health, less pleasure than ordinary adolescents to manage by themselves, and a poor relationship with peers. Mothers indicated a deep impact of the child's illness on their own QoL, and the need for psychological support. In conclusion, a rather good QoL is a long-lasting feature of kidney and liver transplantation in children. Such an assessment is mandatory to identify remaining impairments in some selected areas, either in the recipient or family.

[Validation of the combined SF36/MSQOL test of evaluation of quality of life in migraine patients in France]. / Validation de l'association SF36/MSQOL pour évaluer la qualité de vie des migraineux en France.

The impact of migraine on patients quality of life is great, even between attacks. The aim of this study was to assess the properties of a French language quality of life questionnaire, which associates the Medical Outcome Study Short Form (MOS SF 36) with the Migraine-Specific Quality of Life (MSQOL). Data were obtained from 110 consultant patients of neurology units located in three University hospitals in the center of France. The results indicated a good acceptability of the association of the two questionnaires with a 84p.cent response rate. The Principal Component Analysis showed no change in both SF-36 and MSQOL structures. It also suggested that the two questionnaires were complementary. The high values of the Cronbach alpha coefficients for each scale indicated a high level of internal consistency. The quality of life scores were correlated with external parameters such as frequency, intensity and length of migraine attacks, and social activity reduction due to these attacks. In conclusion, the association of the SF-36 with the MSQOL has the interest of associating generic and specific questionnaire, in a complementary way. This association has good psychometric properties, and can be used to evaluate migraineurs quality of life in French speaking countries.

[Assessment of quality of life for home ventilated patients with Duchenne muscular dystrophy]. / Indices de satisfaction des patients atteints d'une dystrophie musculaire de Duchenne de Boulogne et ventilés à domicile.

A social and psychological survey was conducted for patients with DMD submitted to home mechanical ventilation for more than one year. Thirty six were tracheostomized and 16 were using non invasive ventilation. Fifty two patients were recruited: 36 were tracheostomized and 16 were using non invasive ventilation. Mean age was 25 +/- 5 years. In the two groups: 1- the main disagreement was air leaking and cutaneous erosions. 2- when present, headache, dyspnea, sleep troubles and general fatigue were improved by mechanical ventilation. 3- ventilation was considered as improving health but with an increasing of dependencies. 4- Majors disappointment are sexual life (70 percent) and physical status (40 percent) but patients spent more than half time with positive feeling (92 percent). There was no difference between satisfaction evaluation and type of ventilation. Home ventilated patients with DMD have positive assessment of satisfaction. Despite technical disagreement as air leaking, patients feel an improvement of their life and advise other DMD to use early home ventilation.

[Quality of life of a population of 54 ambulatory children with cerebral palsy. A cross-sectional study]. / Qualité de vie d'une population de 54 enfants infirmes moteurs cérébraux marchants. Etude transversale.

UNLABELLED: To evaluate the impact of handicap on quality of life in children with cerebral palsy and living in family. METHOD: A descriptive study by investigation was conducted in children with cerebral palsy, with the ability to walk, from 4 to 12 years of age, and in their family. Quality of life was evaluated with the AUQUEI questionnaire. Another questionnaire was given to the parents to collect the different variables, which could influence quality of life of the child. RESULTS: The mean age was 9 years. Associations between the studied variables and the quality of life were observed for motor function, number of siblings and the quantity of hours of reeducation given by the family. Parents evaluated their quality of life on the visual scale at 72.23 mm (95CI: 51.60-92.84). There was no correlation between the assessment of quality of life of parents and children. DISCUSSION-CONCLUSION: The better the child's motor function the less satisfied he was. This result shows the poor correlation between quality of life and general condition, impairment or disability. The greater the number of children in the family the less satisfied the child was within the family and the more satisfied the child was at school. A handicapped child has perhaps a more difficult place in the close family and an easier time in a school where the environment is more neutral. The more time that is devoted by the family to reeducation the less the child is satisfied. Quality of life seems to be influenced negatively by the demands of physical therapy, which do not correspond to the reality of the abilities of the child.

[Quality of life study in chronic psychotic patients using a day hospital]. / Etude de la qualité de vie de patients psychotiques chroniques fréquentant un hôpital de jour.

This survey concerned 24 adult patients, who are chronic psychotics, living in town and followed by a day hospital team. Their life quality was evaluated with the help of a validated questionnaire, "Subjective Life Quality Profile" ("PQVS"). The same version of this questionnaire was filled in by the patients and their referent nurse, two times, at six month interval. In the mean-time, the service psychiatrist also filled in questionnaires, assessing the psychiatric symptomatology. The main results confirm the reliability of the tool used and the feasibility of this type of survey with a population of chronic psychotics. The results are coherent at six month interval, and the points of view correspond between the patient and this referent. Finally the life quality is less good when the symptomatology quotation is bad. The aim of this work was to give an account of the patient's life, as seen by himself and by the caretakers.

[Quality of life of lumbago patients cared for in a pain center]. / Qualité de vie de patients lombalgiques suivis dans un centre de la douleur.

OBJECTIVE: To evaluate the quality of life of patients treated in a pain center. METHOD: Sixty eight patients were assessed during their first consultation, then 6, 12 and 18 months later, using a quality of life questionnaire "SQVP or Subjective Quality of Life Profile" validated in French populations and a panel of questionnaires for the monitoring of chronic pain, recommended by the ANAES (French Agency for Health Assessment). RESULTS: Results showed that: the patients' quality of life was clearly deteriorated (lowest quality in the data base--14,000 patients--with regard to the SQVP); the profile obtained (severe handicap) suggests that the lumbagos are part of a psychiatric context; the patients' quality of life clearly improves after 6 months' treatment, but the pain only stabilizes later.

Quality of life in patients at risk of medullary thyroid carcinoma and followed by a comprehensive medical network: trends for future evaluations.

BACKGROUND: As shown in a previous study, the knowledge of the genetic risk in individuals belonging to families at risk of medullary-thyroid carcinoma (MTC) could be associated with impaired quality of life (QoL). PATIENTS AND METHODS: In the present study, we compared the QoL scores obtained in the same period with the subjective quality of life profile (SQLP): in 82 individuals at risk of MTC who had been tested for Ret-mutations; in 200 women at risk of familial breast/ovarian cancer syndrome (BOC); and in a control population of 3,501 healthy volunteers. RESULTS: Significant differences were observed in favour of healthy volunteers as well as individuals at risk of MTC, over women at risk of BOC (mean scores: 0.89, 0.85, and 0.64, respectively, P < or = 0.001), but QoL scores were not statistically different between individuals at risk of MTC and the control population (P = 0.2). However, they were significantly inferior in the subgroup of germline Ret-mutation carriers, as compared to the control population (mean scores: 0.73 and 0.89, P = 0.04). In the latter, the relationships with the children and the family were the most important facets of their QoL. CONCLUSION: Our results confirm the potentially negative impact of the knowledge of the genetic risk of cancer and its consequences in terms of morbidity and follow-up, on the QoL in people followed at oncogenetic visits.

[Personal sports training in the management of obese boys aged 12 to 16 years]. / Entraînement sportif personnalisé dans la prise en charge de garçons obèses âgés de 12 à 16 ans.

OBJECTIVE: Estimation of both physical and psychological effects of an adapted physical training on children undergoing an obesity treatment. MATERIAL AND METHODS: The survey was carried out on 36 obese boys (ages = 12-16 years) who stayed in the medical center for at least four months. Eighteen of them were trained with the SELF method (the SELF-training is global, progressive, adapted to each boy, controlled and takes place within a ten-week period with five sessions a fortnight, each session lasting 30 to 40 minutes). The parameters that were studied concerned auxology, breathing function exploration, aerobic and anaerobic capacities, muscle strength and psychomotor qualities; the subjective effects of the training were estimated with a questionnaire about life quality, and the hand test. At inclusion the results were reported to a standard kind of population. At the end of the training the results of the 18 boys that were trained were compared to those of the 18 controls. RESULTS: Compared to a standard population, the obese children' aerobic capacity is diminished for the maximum power but is identical in absolute value for the VO2 max; their anaerobic capacities, muscle strength and psychomotor capacities are lower and their psyche is affected by the disease. After a three-month training period and after comparison with the 'control' group, there can be noticed a significant improvement in the psychomotor capacities, a major tendency for the improvement of the aerobic capacities and very positive effects on the psyche. CONCLUSION: SELF-training in association with dietetics appears to be very useful in the therapeutic care of obese children. For the follow-up at home it would need to be registered within the domain of physiotherapy.

[Evaluation of the quality of life of infants and very young children: validation of a questionnaire. Multicenter European study]. / Evaluation de la qualité de vie du nourrisson et du très jeune enfant: validation d'un questionnaire. Etude multicentrique européenne.

UNLABELLED: In the last few years, evaluating quality of life in children has become possible using specific instruments; nevertheless, there is still an unsolved issue concerning the earliest ages, when the child is not able to give his/her own opinion. QUALIN, a new instrument designed to assess an infant's quality of life (between the ages of three months and three years) was developed from the study of spontaneous criteria used by parents or caregivers (paediatricians or nurses) when they think about the quality of life of a baby (preliminary survey including 800 open-ended questionnaires). PATIENTS AND METHODS: One thousand four hundred and twelve children under the age of three were included in this validation study. QUALIN questionnaire is a 34-item scale and can be completed by parents or caregivers. Two forms are available: one form is designed for children under the age of one and the other is designed for children between the ages of one and three. The QUALIN questionnaire was translated into English, Italian and Spanish, and a European multicentric validation study was conducted in Belgium, France, Italy, Luxembourg, Spain and Switzerland. Data were collected with QUALIN questionnaires from children's parents and paediatricians. RESULTS: The psychometric properties of the scale are satisfactory (acceptability 90%, Cronbach's coefficient alpha over 0.75, correlations between two raters over 0.50, construct validity with principal component analysis showed emerging factors in agreement with the hypotheses linked to the questionnaire construction). The results are interesting, showing significant differences according to the health status of the children and their country of origin. CONCLUSION: The QUALIN questionnaire can be used for studies concerning the quality of life of children less than three years of age.

[Quality of life of children: importance of its evaluation. Comparison of children in good health with those at risk (psychological, social, somatic)]. / Qualité de vie des enfants: intérêt de son évaluation. Comparaison d'enfants en bonne santé et dans des situations de vulnérabilité (psychologique, sociale, somatique).

A multicentric study was performed in France and Spain: 490 children were evaluated with a previously validated questionnaire including open-ended questions and structured response format questions. Children are either in good health or suffering from somatic diseases, psychological problems or social difficulties; 38% of the children are Spanish, 62% are French; the questionnaire validation was checked again, and confirmed. Children are happy about their leisure, and unhappy when separated from their families. Among the factors affecting the answers to the structured format questions the most important are the social difficulties and to a lesser extent the psychological problems. Somatic diseases impair the child's quality of life in Spain. Children differ according to the country where they live. Among children in good health, Spanish children report a better quality of life than French children. Open-ended answers were only studied in France. They were very different when children with social difficulties or psychological problems filled out the questionnaire and were compared to children in good health or with somatic diseases. Both children with psychological and social difficulties mention more often the relationship domain. Children with social problems never mention their activities as a source of happiness.

Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: a multicentric pilot-evaluation.

BACKGROUND: Many crucial problems are associated with the diagnosis of inherited cancer susceptibility. One of the most important is related to the psychosocial consequences of the knowledge by the patients and their relatives of their own genetical status. Little data are available in the literature, mainly from studies including small numbers of selected and motivated patients. PATIENTS AND METHODS: From January till December 1997, we studied the psychometric and quality of life parameters of 77 subjects followed in two French specialized centers. These subjects had been treated for either sporadic or familial or were at risk for medullary thyroid carcinoma. All patients had previously attended genetic counselling with detection of germline Ret-mutations, were informed on their own genetic risk, had good short-term prognosis and performance status and did not receive recent cancer treatment. Each patient was invited to answer two questionnaires, the hospital anxiety and depression scale (HADS) and the subjective quality of life profile (SQLP). RESULTS: We report herein the descriptive results of this study (HADS and SQLP scores and distributions) and describe the individual clinical covariates that might explain the observed differences between subgroups of individuals. Although psychometric scores appeared similar in these subgroups, quality of life scores were lower in Ret-mutation carriers. Genetically-predisposed patients were less satisfied and expressed more expectations for favourable change in their quality of life. CONCLUSION: This finding suggests a high level of frustration and latent unsatisfaction related either to the management of the genetic information given by the clinicians and its psychosocial consequences or simply to the knowledge of the genetic risk of cancer. Further studies on the individual consequences of genetic testing, information delivery and when necessary psychotherapeutic interventions, are needed to insure the quality of presymptomatic genetic testing in this field of oncology.

[Infant quality of life: criteria of parents and professionals. Development of an evaluation instrument]. / Qualité de vie du nourrisson: critères des parents et des professionnels. Elaboration d'un instrument d'évaluation.

A survey was performed using open-ended questionnaires to be completed by parents or care-givers dealing with very young children (less than 3 years old) in order to study their opinions concerning the child's quality of life. About 800 questionnaires were analyzed with a content-analysis method. Nine categories and about 40 elementary criteria were distinguished. Some criteria were widely quoted. Others appeared useful to discriminate between care givers and parents, between different situations encountered by the child, and his/her age. This information will be used to develop a young child's quality of life scale.

Quality of life assessment in psychiatry: the Subjective Quality of Life Profile (SQLP)--first results of a new instrument.

This article describes early results of a new instrument for measuring quality of life--the French Subjective Quality of Life Profile (SQLP) questionnaire. This 36-item, self-administered questionnaire has been previously validated in a large sample population with somatic disorders. It is characterized by its multidimensional pattern and subjective approach (i.e., the degree of satisfaction with various domains of life, the degree of change anticipated and the importance attributed to these domains). The SQLP was tested with three psychiatric patient samples: people with depression, psychosis or substance abuse. Preliminary findings indicate that the questionnaire is useful in describing psychiatric patients, their characteristics, and explaining some of their changes.

[Psychosocial impact of the first oncogenetic consultation in a familial context of cancers of the breast and the ovary]. / Impact psychosocial d'une première consultation d'oncogénétique dans un contexte familial de cancers du sein et de l'ovaire.

The purpose of the oncogenetic consultation, is to respond to persons who wonder about their risk of developing a tumour and wish to learn about ways of prevention and detection. The object of this investigation is (1) to study the impact of a first consultation in genetics on the quality of life and the psychology of women with a family history of cancer, and women with or without family antecedents but who suffered themselves from breast cancer at an early age (< or = 35 years); (2) to evaluate their risk perception and their comprehension of the information after the consultation. The study was performed on 200 women attending a first consultation at Institut Curie. Fifty-nine of them had no cancer. Among the 141 consultants with cancer, 54 had developed breast cancer at an early age (< or = 35 years). Their quality of life, their psychological state and their knowledge of the risk of breast tumour were evaluated before consulting and 6-8 months afterwards. Before consulting, their quality of life was altered in some (non-relational) fields but their psychic condition was relatively maintained. Six-nine months after consulting, their quality of life had not deteriorated, but tests results on their psychological state were not as good. The initial psychic condition, itself related to the medical status of the consulting women, was the most significant predictor of their quality of life a few months after their first genetics consultation. After consulting, the women expressed satisfaction with the information delivered by the genetician and their appreciation of tumour risks was improved.

[Evaluation of the quality of life of chronic psychotic patients living in supportive housing]. / Evaluation de la qualité de vie de patients psychotiques chroniques vivant en appartements protégés.

This study concerns 46 chronically mentally ill patients living in community support systems. Their quality of life was measured with a validated questionnaire: the "Subjective Quality of Life Questionnaire" ("SQLP"). Both patients and their care givers separately completed the same version of the questionnaire. This study first shows the feasibility of such inquiries with chronically mentally ill patients. It gives a description of the patient's feeling which is different from the usual medical point of view. The life domains the patient is very satisfied with are mostly restricted to food, material conditions, and relationship with the care-givers, but exclude the other relationships. Our data also allow to estimate the degree of agreement and disagreement between the care-givers and their patients.

Patients on methadone maintenance treatment in Geneva.

The purpose of this study was to evaluate the quality of life of heroin dependent patients before and 1 year after the start of methadone maintenance treatment. Subjects were patients (n = 102) requesting treatment in a public methadone maintenance programme in Geneva (Switzerland). This was a prospective follow-up study using a validated questionnaire (SQLP). The SQLP was well accepted by patients and staff. Validity of the questionnaire was reconfirmed in this population. Compared to previously studied populations, the quality of life of heroin dependent patients before start of treatment was poor. More than half the patients were still in treatment after 1 year and their quality of life had clearly improved, in most domains. Like many of their peers in the psychiatric field, the patients had high initial expectations. Expectations decreased significantly over time. It was found that the higher were the initial expectations, the poorer was the quality of life after 1 year. The quality of life of heroin abusers requesting treatment is mediocre, and improved considerably after 1 year of comprehensive methadone maintenance treatment. Quality of life evaluation is feasible in this population and can offer an additional evaluation of quality of substance abuse treatment.

[Evaluation of care: taking into account the patients' quality of life and relational elements]. / Evaluation des soins: prise en compte de la qualité de vie des patients et d'éléments relationnels.

This paper offers a new perspective concerning care evaluation. Patients' quality of life is measured as well as relational and subjective parameters. A questionnaire "SQLP" ("subjective quality of life profile") has been constructed and validated on several thousands subjects. The results obtained have several points of interest. First the questionnaire allows us to describe various populations and their needs; it also allows to track the effects of different treatments and compare them. Finally it also allows to understand some of the treatments' mechanisms of action. The therapeutic relationship has been extensively studied in psychotherapy research. It may be usefull in other therapeutic settings. Various examples are given. A particular attention has been given to the evaluation of the patient/care-giver agreement.

[Evaluation of the quality of life in pediatrics: how to collect the point of view of children]. / Evaluation de la qualité de vie en pédiatric: comment recueillir le point de vue de l'enfant.

There are very few available child quality of life questionnaires. We describe here a French questionnaire (AUQUEI) which consists of a structured format scale (26 items). The first part of the questionnaire studies child satisfaction. Response levels are measured by checking faces expressing different emotional states. The validation is satisfactory, and the questionnaire is able to differentiate healthy children from sick children (HIV positive). A second part of the questionnaire focuses on the child's own quality of life, and is based upon open-ended questions. This second approach allows to broaden the structured format scale and improves the understanding of the child's quality of life. It constitutes a necessary complement to the first part as it avoids using mechanically adult-specific concepts for children. We also found it to be sensitive enough to distinguish sick children from healthy ones. The AUQUEI questionnaire with its two complementary parts appears to be a potentially valuable tool to better understand the experience of sick children, in the various aspects of their life, and to follow their evolution.