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Development, reliability and acceptability of a new version of the DSM-IV Social and Occupational Functioning Assessment Scale (SOFAS) to assess routine social functioning.

OBJECTIVE: Development of a scale to assess patients' social functioning, the Personal and Social Performance scale (PSP). METHOD: PSP has been developed through focus groups and reliability studies on the basis of the social functioning component of the DSM-IV Social and Occupational Functioning Assessment Scale (SOFAS). The last reliability study was carried out by 39 workers with different professional roles on a sample of 61 psychiatric patients admitted to the rehabilitation unit. Each patient was rated independently on the scale by the two workers who knew them best. RESULTS: The PSP is a 100-point single-item rating scale, subdivided into 10 equal intervals. The ratings are based mainly on the assessment of patient's functioning in four main areas: 1) socially useful activities; 2) personal and social relationships; 3) self-care; and 4) disturbing and aggressive behaviours. Operational criteria to rate the levels of disabilities have been defined for the above-mentioned areas. Excellent inter-rater reliability was also obtained in less educated workers. CONCLUSION: Compared to SOFAS, PSP has better face validity and psychometric properties. It was found to be an acceptable, quick and valid measure of patients' personal and social functioning.

Adult↗

Sensitivity to change and the effect of mode of administration on health status measurement.

A measure of global health status, the McMaster Health Index Questionnaire (MHIQ), was assessed to determine two important measurement properties related to its reliability and validity--sensitivity to change and the effect of mode of administration. Ninety-six patients in a physiotherapy clinic were randomly assigned to three mode-of-administration study groups, administered the MHIQ at four points in time including at admission and discharge from the clinic, and assessed for change by their physiotherapist. MHIQ physical function, social function, and emotional function retest scores obtained by self-completion within a 1-week interval were most stable. Physical function scores by any of self-completion, telephone interview, or personal interview were sensitive to change, that is, they improved dramatically by the time of discharge from the clinic. Mode of administration did not affect the size of the change scores. Changes reflected by the physical function scores correlated with changes in physical function reported by a patient's physiotherapist. No systematic changes occurred with social and emotional function scores; this is not surprising in a group of patients with predominantly physical function problems.

Activities of Daily Living↗

Longitudinal prospective evaluation of quality of life in adult patients before and one year after liver transplantation.

We assessed the impact of liver transplantation (LT) on the quality of life (QOL) of French recipients 1 year after surgery. A French version of the questionnaire used by the National Institute of Diabetes and Digestive and Kidney Disease-Pittsburg, USA (NIDDK), was validated by the back-translation method. Five QOL domains were evaluated: measures of disease, psychological distress, personal function, social function, and general health perception. Patients enrolled onto the waiting list completed the questionnaire before and 1 year after LT. Respondents were age- and gender-matched with healthy subjects recruited from the general population (GP). One year after LT, the analysis of data from 67 consecutive patients showed dramatic improvement in the five domains. Compared with baseline, patients noted fewer disease-related symptoms (P <.0001) and lower level of distress overall (P <.001). However, levels of distress caused by excess appetite (P <.01), trembling (P <.05), and headaches (P =.06) were more likely to increase than decrease. Twenty-five percent of patients prevented by their disease from going to work before LT were no longer so limited at 1-year follow-up. General health perception improved remarkably, with seven times as many recipients reporting improved health as reporting worse health. A correlation was found between the pretransplantation severity of cirrhosis and the social and role function after LT (P <.05). In summary, the French version of the NIDDK questionnaire seems to be reliable. The results of transplant recipients were generally close to those of the general population. Although it is not a true return to normal status, it approaches it.

Adolescent↗

Health-related quality of life associated with recombinant human erythropoietin therapy for predialysis chronic renal disease patients.

The investigators evaluated the impact of recombinant human erythropoietin (r-HuEPO) therapy on health-related quality of life (HRQL) in predialysis chronic renal disease patients with anemia. Eighty-three patients were entered into a randomized, parallel-group, open-label clinical trial with follow-up evaluations over 48 weeks. Forty-three patients were assigned to r-HuEPO treatment, and 40 patients were assigned to an untreated control group. Hematocrit levels were measured at baseline and monthly. HRQL was assessed at baseline and at weeks 16, 32, and 48. The HRQL assessment included measures of physical function, energy, role function, health distress, cognitive function, social function, home management, sexual dysfunction, depression, and life satisfaction. Significant improvements in hematocrit levels were observed in the r-HuEPO-treated group (P < 0.0001), and no changes were seen in the untreated group. Correction of anemia (hematocrit > or = 36) occurred in 79% of r-HuEPO-treated patients and 0% of control patients. Significant improvements in assessments of energy (P < 0.05), physical function (P < 0.05), home management (P < 0.05), social activity (P < 0.05), and cognitive function (P < 0.05) were found for the r-HuEPO-treated group. No changes were observed in the control group, except for a decrease in physical function (P < 0.05). Between-group differences favoring the r-HuEPO-treated group were found for energy (P < 0.05) and physical functioning (P < 0.05). In patients receiving r-HuEPO, significant improvements were seen in hemotocrit levels, and these increases resulted in improvements in HRQL.

Adolescent↗

Psychosocial functioning and subjective experience in schizophrenia.

This study examines the relationship between psychosocial functioning and subjective experience in 193 individuals diagnosed with schizophrenia or schizoaffective disorder according to Research Diagnostic Criteria. Psychosocial functioning was measured as work functioning, social functioning, living situation, symptomatology, and intrapsychic aspects of the deficit syndrome. Subjective experience consisted of measures of self-esteem, satisfaction with life, and subjective distress. Multivariate analyses resulted in two major findings. The first finding is a model of psychosocial functioning that consists of two factors: disorder-related variables (symptomatology and intrapsychic deficits) and functional status variables (work, social, and living situation). The second major finding is a two-tiered model of the relationship between psychosocial functioning and subjective experience. The model suggests a primary and pervasive relationship between the disorder-related variables and subjective experience and a secondary and less pronounced relationship between functional status variables and subjective experience. The implications of these findings for treatment and rehabilitation and for the study of subjective experience in schizophrenia are discussed.

Activities of Daily Living↗

Evaluation of a health status measure in adults with high psychosocial risk.

The 63-item Duke UNC Health Profile assesses four dimensions of health status: presence of symptoms, physical function, social function, and emotional function. This instrument was developed for use in primary care research. We have tested its value in a primary care setting among individuals with suspected increased risk of health problems. In a group of 65 white adults with high life changes and weak social supports, this scale produced relatively stable functional status scores over fifteen months. In addition, functional status scores derived from this instrument were strongly correlated with cumulative six-month self-reported morbidity. These findings suggest that the Duke-UNC Health Profile is an acceptably reliable and valid measure of health status for adults with high psychosocial risk of health impairment.

Adult↗

The effects of recombinant human erythropoietin on functional health and well-being in chronic dialysis patients.

As a component of the open-label, multicenter National Cooperative Recombinant Human Erythropoietin (Epo) Study, the health-related quality-of-life effects of Epo therapy were assessed in 484 dialysis patients who had not previously been treated with Epo therapy (New-to-Epo) and 520 dialysis patients who were already receiving Epo therapy at the time of study enrollment (Old-to-Epo). Using scales from the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), health-related quality of life was assessed on study enrollment (baseline) and at an average of 99 days follow-up. At baseline, SF-36 scores for Old- and New-to-Epo patients were well below those observed in the general population, reflecting substantial impairments in functional status and well-being among patients with chronic renal failure. Significant improvements from baseline to follow-up were observed among New-to-Epo patients in vitality, physical functioning, social functioning, mental health, looking after the home, social life, hobbies, and satisfaction with sexual activity (P < 0.05 for each). The mean improvements in hematocrit values among New-to-Epo and Old-to Epo patients were 4.6 and 0.3, respectively. At the time of follow-up, SF-36 scores for New-to-Epo patients were comparable with those observed among Old-to-Epo patients, whose scores did not change significantly from baseline to follow-up. Analysis of the relationship between Epo therapy, hematocrit values, and health-related quality of life suggest that some of the beneficial quality-of-life effects of Epo are mediated through a change in hematocrit level.

Activities of Daily Living↗

Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I.

OBJECTIVE: To assess the prevalence of severe fatigue and its relation to functional impairment in daily life in patients with relatively common types of neuromuscular disorders. METHODS: 598 patients with a neuromuscular disease were studied (139 with facioscapulohumeral dystrophy, 322 with adult onset myotonic dystrophy, and 137 with hereditary motor and sensory neuropathy type I). Fatigue severity was assessed with Checklist Individual Strength (CIS-fatigue). Functional impairments in daily life were measured with the short form 36 item health questionnaire (SF-36). RESULTS: The three different neuromuscular patient groups were of similar age and sex. Severe experienced fatigue was reported by 61-74% of the patients. Severely fatigued patients had more problems with physical functioning, social functioning, mental health, bodily pain, and general health perception. There were some differences between the three disorders in the effects of fatigue. CONCLUSIONS: Severe fatigue is reported by the majority of patients with relatively common types of neuromuscular disorders. Because experienced fatigue severity is associated with the severity of various functional impairments in daily life, it is a clinically and socially relevant problem in this group of patients.

Activities of Daily Living↗

Ethnic differences in the relationship between depressive symptoms and health-related quality of life in people with type 2 diabetes.

OBJECTIVE: To examine ethnic differences in the relationship between depressive symptoms and specific aspects of heath-related quality of life in people with type 2 diabetes. DESIGN: Cross-sectional data from 190 people with type 2 diabetes of Native Hawaiian (50%), Filipino (16%), Japanese (18%), and mixed-ethnic (16%) ancestries from the rural community of North Kōhala, Hawai'i were examined in this study. Depressive symptoms were measured with the Center for Epidemiological Studies-Depression (CES-D) scale. Health-related quality of life was measured with the Short Form-36 Health Survey (SF-36). Eight health-related quality of life constructs were examined: Physical Functioning, Role-Physical Functioning, Role-Emotional Functioning, Social Functioning, Bodily Pain, Vitality, General Health, and Health Transition. RESULTS: Hierarchical regression analyses of the interaction between ethnicity and the SF-36 subscales of Physical Functioning, Role-Emotional Functioning, Bodily Pain, Vitality, and General Health indicated statistically significant associations with CES-D scores after controlling for sociodemographic factors, glycemic status, and social support. CONCLUSION: Ethnicity moderated the relationship between depressive symptoms and the health-related quality of life aspects of physical and role-emotional functioning, bodily pain, vitality, and general health perception in people with type 2 diabetes. This relationship was strongest for Filipinos followed by Native Hawaiians and people of mixed-ethnic ancestries.

Analysis of Variance↗

Measuring performance in primary care: what patient outcome indicators do physicians value?

BACKGROUND: Determining which patient outcome indicators may be appropriate to include in a primary care, practice performance tool is a difficult task. Unfortunately, no published studies currently document the opinions of these physicians regarding which indicators they most value. OBJECTIVE: To ascertain the level of agreement among primary care physicians regarding the most salient patient outcome indicators for measuring performance in primary care. METHODS: A random population survey of 115 adult primary care physicians. The survey consisted of a comprehensive list of health characteristics included in 8 validated instruments (eg, SF-36, Sickness Impact Profile), as well as 10 common clinical indicators and 6 health behaviors. Each item was ranked using a 5-point Likert scale regarding its value for inclusion in a performance measure. RESULTS: Analysis of 93 returned surveys (RR 81%) indicated strong agreement (> or = 75%) that 19 health characteristics were important or very important. These characteristics fit into 8 domains: physical functioning, psychological functioning, social functioning, pain, quality of life, physiologic symptoms, health behaviors, and clinical indicators. Notably absent were measures of social support and health perceptions. CONCLUSIONS: Strong agreement exists among practicing primary care physicians regarding the most valued patient outcome indicators. Development of practice performance measures should be influenced by such data.

Cross-Sectional Studies↗

The reliability and validity of a ten-item measure of functional status.

The accurate assessment of functional status is an important clinical activity in family practice. Many of the measures of function developed for research purposes, however, have questionable applicability to primary care practices. The Duke-UNC Health Profile (DUHP) is a 63-item instrument that assesses four dimensions of function: symptom experiences, physical function, social function, and emotional function. The reliability and validity of a ten-item subset (the mini-DUHP) of the DUHP was examined for 71 white adults with a profile of high stressful life changes and weak social supports. These subjects completed the DUHP on two occasions and provided personal morbidity data by monthly mailed questionnaire for an intervening six-month period. On both administrations of the instrument, mini-DUHP scores were strongly correlated with composite DUHP scores (r = .81 and .84) and moderately correlated with each of the four functional dimension scores. The mini-DUHP demonstrated good temporal stability (r = .58). Mini-DUHP scores, determined both before and after the six-month period, were correlated with cumulative self-reported hospital days, bed disability days, restricted activity days, and physician utilization. Responses to the mini-DUHP strongly predicted bed disability, restricted activity, and physician visits after controlling for the effects of sociodemographic characteristics by multivariate analysis. This ten-item scale may be useful and practical in the assessment and monitoring of function in a primary care setting.

Adult↗

Quality of life in patients with osteoporosis.

Complaints regarding, and morbidity of, osteoporosis are caused by fractures which are associated with pain and decrease of physical function, social function, and well-being. These are aspects of quality of life. Health-related quality of life covers physical, mental, and social well-being. Quality of life may be measured for evaluation of treatment effects in clinical trials, for the assessment of the burden of the disease of osteoporosis, and for estimates of the cost-effectiveness of different treatment scenarios in health care policy. Quality of life has been measured in patients with osteoporosis with generic questionnaires such as SF-36 and EQ-5D, which can be used in many diseases, or with one of the six available osteoporotic-specific questionnaires, e.g., Qualeffo-41 or OPAQ. Every questionnaire has to be validated to assess psychometric properties and discrimination power between patients with osteoporosis and control subjects. The value attached to specific health states (utility) can be assessed with some generic instruments or by systematic questioning of the patient, e.g., the time-trade-off method. This results in one value for health status ranging from 0 (death) to 1 (perfect health). Utility values can be used to calculate loss of quality-adjusted life years (QALY). Most data have been obtained in patients with prevalent vertebral fractures. Scores of specific and generic questionnaires showed significant loss of quality of life with prevalent vertebral fractures. In addition, studies with Qualeffo-41 and OPAQ showed a deteriorating quality of life with increasing number of vertebral fractures. Lumbar fractures had more impact on quality of life than thoracic fractures. Incident vertebral fractures were also associated with a decrease of quality of life especially in the physical function domain. This applied to clinical incident vertebral fractures as well as to subclinical fractures to a lesser degree. Loss of quality of life following hip fracture has been documented with generic and osteoporosis-specific questionnaires. A considerable loss was observed in the 1st year with some improvement in the 2nd year, but not to baseline values. Quality of life depended on comorbidity, mobility, activities of daily life (ADL)-independence, and fracture complaints. Utility loss has been observed following hip fracture, especially disabling hip fracture, hip and vertebral fracture combined, or multiple vertebral fractures. Utility following osteoporotic fractures has been valued by patients, the healthy elderly, and panels of experts. The healthy elderly gave the worse quality-of-life scores (lower utility) to various hip fractures than patients with hip fractures themselves. In conclusion, suitable instruments exist for measuring quality of life in patients with osteoporotic fractures. These instruments are useful for clinical trials and for assessment of the burden of disease.

Fractures, Bone↗

[Survey on psychologic status and quality of life for HIV infected people or AIDS patients].

OBJECTIVE: To make a comparison on the psychologic status and quality of life between HIV infected people/AIDS patients and noninfected people in two counties (Zizhong and Zhaojue) with high rates of AIDS morbidity and HIV infection. METHODS: The psychologic status and quality of life for 71 HIV infected people or AIDS patients and 97 non-infected people were measured by a questionnaire containing SAS, SDS, GQOLI-74 and SSS. Data were analyzed with SPSS. RESULTS: SDS and SAS scores for HIV/AIDS people were significantly higher than those for non-infected people (t=5.343, t=5.272; P<0.001). Total GQOL-74 scores for HIV/AIDS people were significantly lower than those for non-infected people [total scores for HIV/AIDS people 52.20 (9.41), for non-infected people 66.36 (8.90); P<0.001]. The score in each of the four dimensionalities (physical function, psychological function, social function and material status) for HIV/AIDS people was lower than that for non-infected people (P<0.01). SDS and SAS scores of HIV/AIDS people were significantly correlated with disease status, substances abuse, social support and quality of life. GQOLI-74 scores of HIV/AIDS people were significantly correlated with disease status and social support. CONCLUSION: Depression and anxiety exist commonly among the HIV/AIDS people, and these negative emotions are particularly related to the severity of their disease, substances abuse and lack of social support. The quality of life of HIV/AIDS people is significantly lower than that of the general population, and this is particularly related to the severity of their disease, lack of social support and low level of quality of life.

Adult↗

A comparison of paroxetine versus paroxetine plus amisulpride in the treatment of dysthymic disorder: efficacy and psychosocial outcomes.

Dysthymic disorder is a chronic depressive condition with considerable psychosocial impairment. Even if DD patients respond to various antidepressant medications, there has been little systematic study on antidepressant-refractory DD. Only a few trials have evaluated the effects of treatment on psychosocial functioning of dysthymic patients. In this 3-month, open-label study, 60 outpatients with DSM-IV criteria for dysthymic disorder who failed to respond to 3-month treatment with paroxetine 20 mg/day were randomly assigned to treatment with paroxetine 40 mg/day or paroxetine 20 mg/day plus amisulpride 50 mg/day. The effects of the two treatments were assessed for both mood symptoms (21-item Hamilton Rating Scale for Depression, Montgomery-Asberg Depression Rating Scale, Clinical Global Impression, severity and improvement) and psychosocial outcomes (DSM-IV Global Assessment of Functioning, Social Adaptation Self-evaluation Scale). Analysis of variance on all rating scales showed that both treatments were effective over this observation period. Response and remission rates did not differ in the treatment groups. A significantly greater psychosocial improvement was observed in the group receiving combined treatment compared with patients receiving paroxetine alone. Both treatments appeared to be effective in our sample of dysthymic subjects. Combined treatment with paroxetine and amisulpride resulted in a better outcome in terms of social functioning.

Adult↗

Validation of a new quality of life questionnaire for acute migraine headache.

A brief migraine-specific quality of life questionnaire was developed to assess the quality of life decrement associated with an acute migraine attack in the 24-hour period following headache onset. The migraine quality of life questionnaire has 15 questions across five domains (work functioning, social functioning, energy, concerns, and symptoms). A prospective, observational study was conducted to evaluate the characteristics of internal consistency, construct and discriminant validity, and responsiveness of the migraine quality of life questionnaire. One hundred thirty-eight subjects with migraine were recruited. One hundred seven subjects completed a baseline and a 24-hour postmigraine quality of life questionnaire, along with a migraine diary for recording headache severity, activity limitation, associated symptoms, duration of headache, and use of migraine medication. All five migraine quality of life questionnaire domains showed good internal consistency (Cronbach's alpha, 0.74-0.95). The strongest correlations were seen between activity limitation and associated symptoms and the migraine quality of life questionnaire work, social, and energy domains. Significant differences in mean questionnaire scores between subjects were found with frequency of medication use, global change in symptoms, headache duration, and severity. All five domains showed significant responses within subjects from a migraine-free period to an acute migraine period (P < 0.0001). In summary, the migraine quality of life questionnaire showed good internal consistency, construct and discriminant validity, and responsiveness to acute migraine attacks.

Acute Disease↗

Vulvar cancer patients' quality of life: a qualitative assessment.

To develop a vulvar cancer-specific quality of life (QOL) subscale to accompany the Functional Assessment of Cancer-General (FACT-G) questionnaire, semistructured interviews were performed with 15 patients treated for vulvar cancer (FIGO stage 0-3). All but one patient, who received chemoradiotherapy, were treated by radical vulvectomy and six patients received a groin lymph node dissection. Patients experienced reductions in several aspects of QOL including emotional functioning, physical functioning, social functioning, sexuality, and body image. Six patients suffered from lymphedema of the legs with a mean severity of 3.5 on a 10-point scale. Four patients reported pruritus (severity rating 8.5). Seven patients expressed a need for more information about the illness and treatment. Only four patients returned to employment after treatment, and all of these patients reported work-related problems. Reductions in sexual functioning were a major concern for five patients, all younger than 65 years. Other topics were groin discomfort after removal of the lymph nodes and disturbance by odor from the vulva. Results of this study revealed vulvar cancer-specific reductions in QOL for inclusion in the newly developed vulvar cancer-specific subscale.

Age Factors↗

[Comparison of subjective and objective quality of life in a group of schizophrenic patients].

AIM: The aim of this study is a comparison of subjective and objective quality of life in schizophrenic patients. METHODS: The research was carried out on 120 in- and out-patients (from 19 to 65 years) who fulfilled ICD-10 and DSM-IV criteria for schizophrenia. The quality of life was assessed by means of two instruments: Quality of Life Scale (QLS, Heinrichs et al. 1984), Self-Report Quality of Life Measure for People with Schizophrenia (SQLS, Wilkinson et al. 2000). The basic statistical methods used were: correlation analysis between measurable variables with Pearson's index (P), t-Student test, analysis of variance, factor analysis. RESULTS: In the investigated group there is no correlation between subjective and objective quality of life. Sex does not influence a correlation between these variables. Subjective and objective quality of life correlate with each other only in out-patients' group (P = -0.386). The factor analysis of SQLS distinguished 7 factors: mood; everyday activities, side effects connected with movement; side effects- others; support; interpersonal contacts; others; this division differs completely from a division on subscales. The factor analysis of QLS distinguished 3 factors: intrapsychic functioning; social functioning; functioning in roles; this division is similar to a division on subscales. CONCLUSIONS: It seems that in the schizophrenic patients' group using subjective and objective ways to assess the quality of life determines a difference of the obtained results. Only the subjective measurement fulfills the assumption of quality of life definition, that is why the usefulness of QLS in assessing quality of life is rather restricted.

Activities of Daily Living↗

Influence of pain and quality of life on desire for hastened death in patients with advanced cancer.

OBJECTIVE: to assess the relationship between quality of life, pain and desire for hastened death in advanced cancer patients. METHODS: 120 Greek patients with advanced cancer were interviewed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 version 3.0 (EORTC QLQ-C30), the Greek Brief Pain Inventory (G-BPI), the Greek Hospital Anxiety and Depression Scale (G-HADS) and the Greek Schedule of Attitudes toward Hastened Death (G-SAHD). RESULTS: statistically significant associations were found between total G-SAHD scores and scores for the worst level of pain in the previous 24 hours (G-BP13) (r = 0.279, P = 0.002), and between total G-SAHD scores and scores for the level of pain relief obtained in the last 24 hours (G-BP18) (r = -0.326, P = 0.0005). The strongest correlations were found between G-SADH and emotional functioning (r = 0.569, P<0.0001) and global quality of life (r = -0.331, P<0.0001) from EORTC QLQ-C30. In multivariate analyses, emotional functioning, social functioning, financial impact, and the interference of pain in general activity and mood were significant predictors of G-SAHD (all P<0.0001). CONCLUSION: quality of life and pain appeared to have a statistically significant relationship with desire for hastened death. Adequate palliative care should alleviate pain and the desire for hastened death, improving quality of life.

Activities of Daily Living↗