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An empowerment-based educational program improves psychological well-being and health-related quality of life in Type 1 diabetes.

Educational programs are reported to improve metabolic control and well-being in Type 1 diabetes mellitus (DM), but the effects of newly- structured interventions, aimed at promoting empowerment in educated patients in active selfcare, have received little attention. Ninety patients with Type 1 DM in intensive insulin treatment were invited to an empowerment-based educational intervention. Changes in quality of life and psychological well-being in the 54 patients participating in the program (median age, 44 yr) were compared with those measured in patients who refused. The following questionnaires were administered at baseline and 12 months later: Psychological General Well-Being (PGWB), Medical Outcome Survey Short-Form 36 (SF-36), and Well-Being Enquiry for Diabetics (WED). Baseline values were indicative of moderate, but significant, psychological distress in the whole cohort. At follow-up, the experimental group had a better metabolic control {glycosylated hemoglobin, -0.4% [time x treatment analysis of variance (ANOVA), p = 0.005 vs controls]}, and a general improvement in comprehensive indices and most scales of PGWB and SF-36. Vitality (p = 0.042) and Social Functioning (p = 0.039) were no longer different from population norm. Similarly, the Symptoms (p = 0.005), Discomfort (p = 0.043) and Impact scales (p = 0.032) of WED, reflecting physical functioning, diabetes-related worries and familial relationships, role functioning and social network, improved significantly in treated patients. An educational empowerment-based intervention significantly improves the psychosocial aspects of diabetes and quality of life also in patients in active and effective self-care. Repeated educational interventions are the way towards a normal life with Type 1 DM.

Adolescent↗

Health-related quality of life after restorative proctocolectomy for ulcerative colitis: long-term results.

Restorative proctocolectomy (RPC) is the favorite operation for ulcerative colitis, but it may influence health-related quality of life (HRQL). Our aims were to determine the long-term HRQL of patients and its modifications after a 5-year follow-up and to identify any risk factor for a worse outcome. We enrolled 36 patients submitted to RPC (mean follow-up 8.4 +/- 4.7 years), 36 ulcerative colitis (UC) patients, and 36 healthy subjects. We used a previously validated questionnaire that explored bowel symptoms, systemic symptoms, emotional function, and social function. A series of 17 patients had completed the same questionnaire 5 years earlier. Clinical and surgical factors were investigated. Statistical analysis was performed with Student's t-test, Wilcoxon matched-pairs test, and Fisher's exact test. The scores of the RPC patients were significantly better than those of moderate or severe UC patients, similar to those with remission/mild UC, and higher than those of the controls. The scores of patients interviewed 5 years earlier did not change in the present study, except for patients during the first postoperative year, in whom the scores were now significantly better. The analysis of RPC patients in subgroups showed that the use of drugs, high stool frequency, pouchitis, pelvic complications, and younger age at UC diagnosis worsened the HRQL outcome. We concluded that RPC patients, after a long-term follow-up, had an HRQL similar to that of the remission/mild UC patients. Recently operated patients improved their quality of life mainly because of improved emotional function, and patients who had been operated on for a longer time maintained their HRQL. HRQL is influenced by drugs, stool frequency, pouchitis, postoperative pelvic complications, and age at diagnosis.

Activities of Daily Living↗

Psychometric properties of the simplified Chinese version of the EORTC QLQ-BR53 for measuring quality of life for breast cancer patients.

A Simplified Chinese version of the EORTC QLQ-BR53 was evaluated using responses from 233 patients with breast cancer in China by assessing the construct and criterion-related validity, internal consistency and test-retest reliability, and responsiveness as measured by score changes of the scales. Internal consistency reliability measured by Cronbach's coefficient alpha is greater than 0.75 for most multi-item scales except cognitive functioning (0.41) and breast symptoms (0.71). Test-retest reliability coefficients for all domains are greater than 0.80 with the exception of physical functioning (0.65), social functioning (0.75), appetite loss (0.75), diarrhea (0.72), and body image (0.72). Correlation and factor analysis among domains and items showed good construct validity for both QLQ-C30 and QLQ-BR23. Score changes over time were observed in most domains except emotional functioning, global health status/QOL, dyspnoea, constipation, diarrhea, financial difficulties, sexual functioning, sexual enjoyment, and breast symptoms. Therefore, the Simplified Chinese version of QLQ-BR53 shows reasonable validity, reliability, and responsiveness and can be used to measure QOL for Chinese patients with breast cancer.

Adolescent↗

Chronic musculoskeletal pain and functional status in juvenile rheumatoid arthritis: an empirical model.

An empirical model is proposed and tested on variables hypothesized to influence functional status in 23 children with juvenile rheumatoid arthritis experiencing chronic musculoskeletal pain. Child psychological adjustment, family psychosocial environment, chronic musculoskeletal pain, and disease activity were entered into multiple regression analyses to statistically predict 4 functional status criterion variables: activities of daily living (ADL), activities involvement, school functioning, and social functioning. Predictor variable relationships were found for all 4 functional status criterion variables, suggesting initial support for this empirical model of functional status in children with juvenile rheumatoid arthritis experiencing chronic musculoskeletal pain.

Activities of Daily Living↗

Robotic techniques improve quality of life in patients undergoing atrial septal defect repair.

BACKGROUND: Minimally invasive cardiac surgery has emerged as an alternative to conventional, open surgery. Although most studies of robotically assisted cardiac surgery have reported morbidity and mortality, few have addressed outcome measures, such as pain and quality of life, which was the aim of this study. METHODS: Eleven patients with atrial septal defects (ASD), and five patients with patent foramen ovale, underwent repair using the Da Vinci system (Intuitive Surgical, Mountain View, CA). The Medical Outcomes Study Short Form Survey (SF-36), along with two additional questions, were administered to these patients on postoperative day 30, along with a similar number of patients who underwent ASD repair by mini-thoracotomy or sternotomy. Quality of life endpoints included bodily pain, vitality, mental health, general health, physical function, and social function. RESULTS: Robotic patients demonstrated significantly higher scores in 6 of the eight variables (p < 0.05). There was no significant difference in intensive care unit or overall hospital stay among the groups (p = NS). Robotic patients returned to work after 40.2 +/- 30.2 days, mini-thoracotomy patients after 45.6 +/- 27.9 days, and sternotomy patients after 51.7 +/- 40.2 days (p = 0.767). There were no significant differences in SF-36 scores between patients who underwent mini-thoracotomy and sternotomy approaches. CONCLUSIONS: Closure of an ASD can be performed safely and effectively via an endoscopic approach. Robotic technology minimized the degree of invasiveness, hastened postoperative recovery, and improved quality of life, although length of hospital stay was unchanged.

Adult↗

Development and validation of a brief instrument for routine outcome monitoring in opioid maintenance pharmacotherapy services: the brief treatment outcome measure (BTOM).

AIM: To develop a brief, multi-dimensional instrument for routine, on-going treatment outcome monitoring in alcohol and other drug (AOD) services in Australia and examine the underlying psychometric properties. This study focuses on opioid maintenance pharmacotherapy (OMP) services. DESIGN: Researcher-administered test-retest interviews and clinician administered interviews. SETTING: The test-retest interviews took place in two private and two public OMP clinics in Sydney, Australia. The clinician-administered interviews took place in 37 metropolitan, rural and prison OMP services in New South Wales, Australia. PARTICIPANTS: One hundred and sixty current OMP clients for the test-retest interviews and 2004 clients commencing OMP treatment for the clinician-administered interviews. MEASURES: Thirty-two items across the domains of dependence, blood-borne virus exposure risk, drug use, health/psychological functioning and social functioning. FINDINGS: The internal reliability of the brief treatment outcome measure (BTOM) is satisfactory. Retest reliabilities for the scales and drug use scores are good to excellent indicating their consistency with multiple measurements across time and different interviewers and concurrent validation of BTOM scales with analogous scales from similar instruments yielded acceptable agreement. Average completion times of the BTOM were 14.5 min, when administered in a research context and 21 min in a clinical context. CONCLUSIONS: A brief, valid and reliable questionnaire has been developed for monitoring treatment outcome over the range of OMP services. The BTOM contains a core set of outcome measures, which can be easily adapted for integration into routine clinical practice across the range of AOD services.

Adult↗

Impact of sleep-related breathing disorders on health-related quality of life in patients with chronic heart failure.

BACKGROUND: Quality of life in patients with chronic heart failure (HF) is often severely compromised. Sleep-related breathing disorders (SRBD) like Cheyne-Stokes Respiration (CSR) or obstructive sleep apnea (OSAS) are often observed in patients with severe HF resulting in fragmentation of sleep, excessive daytime sleepiness and an increased mortality. While an apnea/hypopnea-index (AHI) >30/h represents an independent predictor of poor prognosis, clinical relevance of even minor SRBD with an AHI <30/h remains unclear with respect to quality of life, exercise capacity or depression rate. METHODS: Sixty-nine consecutive ambulatory patients with stable HF (NYHA II-III, EF 25%) underwent two night polygraphies with a six-channel ambulatory recording. Spiroergometry was performed, and patients were examined for sleep quality (PSQI), depressed mood (BDI) and health-related quality of life (SF-36). The data were compared to 10 age-matched healthy controls and 11 patients with OSAS (AHI 14-29/h) not suffering from HF. RESULTS: Fifty-one patients completed follow up. 52% were positively diagnosed for SRBD (AHI 16-30/h: 12 patients CSR, 5 patients OSAS, 9 patients mixed); 25 patients (48%) showed no relevant SRBD. Patients with HF and SRBD had lower quality of life than patients without SRBD and HF. The severity of SRBD as indicated by the AHI significantly correlated with quality of life measures: Bodily pain, physical functioning and social functioning showed largest impairment in patients with HF and SRBD. Furthermore, elevated depression rates in correlation to the AHI were only observed in patients with SRBD similar to patients with OSAS without HF. CONCLUSION: Even minor SRBD in patients with HF independently influence quality of life and correlate with estimation of depression and sleep disturbances.

Adult↗

OAKHQOL: a new instrument to measure quality of life in knee and hip osteoarthritis.

OBJECTIVE: To develop a questionnaire with which to measure quality of life (QoL) in patients with knee and hip osteoarthritis (OA). STUDY DESIGN AND SETTING: Thirty-two caregivers and 96 OA patients were interviewed individually (using cognitive and face-to-face techniques) and in focus groups. A group of experts working independently at first and then consensually used the interview transcripts to generate a 46-item questionnaire. RESULTS: Analysis of questionnaires completed by 263 patients with hip or knee OA resulted in the exclusion of three items (two because of low reliability and one because of a low response rate). Principal component analysis revealed four factors: physical activity, mental health, social functioning, and social support. A pain dimension was individualized. Preliminary testing showed the reliability of the five dimensions to be satisfactory (intraclass correlation coefficients: 0.70-0.85), construct validity was adequate when correlated with the SF36 (Spearman correlation coefficients: 0.43-0.75), and discrimination was satisfactory. The osteoarthritis knee and hip quality of life questionnaire (OAKHQOL) consists of 43 items in five dimensions and three independent items. CONCLUSION: The OAKHQOL is the first specific knee and hip OA quality of life instrument. Its development followed an a priori structured strategy to ensure content validity. It meets psychometric requirements for validity and reliability.

Activities of Daily Living↗

Classifying episodes in schizophrenia and bipolar disorder: criteria for relapse and remission applied to recent-onset samples.

Research on predicting and preventing episodes of schizophrenia and mood disorder lacks consistent, specific definitions of episodes. We present an operational system for identifying relapse, exacerbation, and remission of schizophrenia and bipolar disorder within longitudinal studies that involve repeated symptom assessments. Three major classes of episodic outcome are defined: relapse or significant exacerbation, nonrelapse, and stable, severe persisting symptoms. These major classes are further subdivided to distinguish nine categories of episodic outcome. To examine ease of use, interrater reliability, and validity, the classification system was applied to recent-onset samples of schizophrenia patients (N=77) and bipolar mood disorder patients (N=23) followed on medication for 9- to 12-month periods. A range of episodic outcomes were distinguished with high interrater reliability. Despite being prescribed continuous medication, 21% of the recent-onset schizophrenia patients and 61% of bipolar patients met criteria for relapse or significant exacerbation during this follow-up period. Predictive relationships support the validity of this system for classifying episodes. A computer program is available to facilitate its use. Use of these explicit definitions of episodes may help to clarify the relationship between episodic outcome and other fundamental domains of illness outcome, particularly other symptom dimensions, work functioning, and social functioning.

Adult↗

Systemic methotrexate therapy versus laparoscopic salpingostomy in patients with tubal pregnancy. Part I. Impact on patients' health-related quality of life.

OBJECTIVE: To compare patients' health-related quality of life after systemic methotrexate therapy versus laparoscopic salpingostomy for tubal pregnancy. DESIGN: Multicenter randomized clinical trial. SETTING: Departments of obstetrics and gynecology of six Dutch hospitals. PATIENT(S): Hemodynamically stable patients with a laparoscopically confirmed unruptured tubal pregnancy without signs of active bleeding, who were randomly assigned to undergo either systemic methotrexate therapy or laparoscopic salpingostomy. INTERVENTION(S): Standard health-related quality of life questionnaires administered before and 2 days, 2 weeks, 4 weeks. and 16 weeks after confirmative laparoscopy. MAIN OUTCOME MEASURE(S): Health-related quality of life. RESULT(S): Health-related quality of life was impaired most severely 2 days after confirmative laparoscopy in both treatment groups and improved during follow-up. Health-related quality of life was impaired more severely after systemic methotrexate therapy than after laparoscopic salpingostomy. Medically treated patients had more limitations in physical functioning, role functioning, and social functioning; had worse health perceptions, less energy, more pain, more physical symptoms, and a worse overall quality of life; and were more depressed than surgically treated patients. CONCLUSION(S): Systemic methotrexate therapy had a more negative impact on patients' health-related quality of life than did laparoscopic salpingostomy. This negative impact on patients' health-related quality of life of systemic methotrexate therapy should be taken into account when deciding on the appropriate therapy for tubal pregnancy.

Adaptation, Psychological↗

Cognitive-behavioral interventions improve quality of life in women with AIDS.

OBJECTIVE: We tested the effects of a 10-week group-based cognitive-behavioral stress management/expressive-supportive therapy intervention (CBSM+) and a time-matched individual psychoeducational condition for 330 women with AIDS reporting moderate to poor baseline quality of life (QOL). The goal of this study was to examine treatment effects on total QOL and 11 QOL domains from baseline to post-intervention follow-up. METHODS: Participants were assessed at baseline, randomized to a treatment condition (individual psychoeducation condition n=180, group-based CBSM+ condition n=150), participated in the intervention for 10 weeks and assessed again within 4 weeks following the intervention. QOL was measured using the Medical Outcomes Study-HIV-30. RESULTS: QOL scores increased over the course of both interventions for the total QOL score and three QOL domains: cognitive functioning, health distress and overall health perceptions. While women in the CBSM+ group condition showed a significant improvement in mental health QOL from pre- to post-intervention, women in the individual condition did not change. No changes were observed for energy/fatigue, health transition, single-item overall QOL, pain, physical well-being, role functioning or social functioning in either condition. CONCLUSION: Results suggest that group-based CBSM+ and individual psychoeducational interventions are effective at improving certain aspects of QOL and that group-based CBSM+ may be particularly effective at increasing QOL related to mental health in this population of women with AIDS.

Acquired Immunodeficiency Syndrome↗

Psychologic factors in scleroderma.

CB interventions have been shown to reduce pain and improve psychosocial functioning in patients who have chronic illnesses, particularly chronically painful rheumatologic syndromes. These interventions are typically administered by specially trained professionals and are conducted during weekly individual or group sessions. When focused on pain and chronic illness, these interventions seem to have, at best, small effects on depression. Data from the headache literature and recent data about patients who have dental/facial pain indicate that minimal-contact CB therapy, the combination of some professional contact with audiotaped and written materials, may reduce pain in many patients, but the impact on functioning is less clear. Future studies should examine the impact of CB interventions on pain, depression, concerns about disfigurement, and physical and psychosocial functioning in scleroderma. Such knowledge is necessary for the optimal care of persons who have this debilitating illness. Although complicated, the advent of disease-specific interventions that are administered by way of the Internet may prove particularly useful in a rare illness, such as scleroderma. Psychologic factors with demonstrated relevance to scleroderma include pain, depression, and distress about disfigurement, physical function, and social function. Although these dimensions of quality of life are interrelated, pain, depression, and distress about disfigurement are common and may respond to psychologic interventions.

Adaptation, Psychological↗

Responsiveness of the SF-36 among veterans with diabetes mellitus.

To examine the responsiveness of the Medical Outcomes Study 36-Item Short Form (SF-36) to the development of diabetes complications over time. We studied a cohort of 331 diabetic veterans participating in a prospective study of risk factors for foot complications. Eight SF-36 scales [general health (GH), physical functioning (PF), social functioning (SF), mental health (MH), physical role (RP), emotional role (RE), bodily pain (BP), and vitality (VT)] and 25 diabetes complications characteristics (DCC) from history and symptom questionnaires and physical exam findings were compared over a mean interval of 3.1 years. The subjects were mostly married, white males with a mean age of 63.5 years, with primarily type 2 diabetes (91%) and a mean diabetes duration of 9.7 years at baseline. There was a statistically significant interval decrease in the GH scale of 6.1 points (effect size [ES] 0.24), PF decreased 9.7 (ES 0.38), SF decreased 5.8 (ES 0.19), PR decreased 14.7 (ES 0.38), BP decreased 4. 0 (ES0.14), VT decreased 4.5 (ES 0.16), total DCC increased by 1.8 (ES 0.53), and hemoglobin A(1c) declined 1.3% (ES 0.48). An increase of >1 DCC was associated with an average loss of 7.2 to 11.8 points on six SF-36 scales (GH, PF, SF, RP, BP, VT). The development of any renal complication was related to decrements in five SF-36 scales (GH, PF, SF, RP, VT) while the appearance of any neuropathy complication was associated with a decline in four SF-36 scales (GH, PF, PR, VT). These results imply that six of the SF-36 scales are responsive to the development of diabetes complications over time among elderly veterans, supporting their use in longitudinal research. Renal and neuropathy complications have the greatest effects on the SF-36.

Aged↗

Learning disability and epilepsy. 2, a review of available outcome measures and position statement on development priorities.

People with epilepsy plus learning disabilities pose a challenge in terms of clinical management and research investigation, and, to date, the measurement of outcomes in this population has been limited. There have been uncertainties concerning both the 'what' and the 'how' of assessment. This paper presents a comprehensive review of available outcome measures across nine domains, i.e. relating to seizures, drugs, cognitive function, behaviour, social functioning, carer functioning, attitudes, motivation and 'quality of life'. This last domain reflects more global measures designed to encompass several assessment strands. The uses and limitations of each scale is discussed and, where data are available, psychometric properties are also presented. The paper concludes with suggestions for the further development of outcome measures in this population.

Epilepsy↗

Torasemide vs. furosemide in primary care patients with chronic heart failure NYHA II to IV--efficacy and quality of life.

BACKGROUND: The hypothesis was that torasemide, due to more predictable pharmacokinetics/pharmacodynamics, induces greater improvements in functional and social limitation than furosemide and reduces the frequency of hospitalisations in primary care patients with chronic heart failure (CHF). PATIENTS AND METHODS: Prospective, randomized, unblinded study in primary care, 237 patients with CHF (NYHA II-IV), all on ACE inhibitors. Randomisation: torasemide (n=122) or furosemide (n=115), treated for 9 months. ENDPOINTS: Clinical efficacy, quality of life, safety, tolerability, hospitalisations. RESULTS: Clinical improvement was observed in both groups, but the trend to improve by at least one NYHA class was significant only in torasemide- (P=0.014), but not in furosemide-treated patients. There were no differences with regard to adverse events and hospitalisation due to CHF. Overall, tolerability (P=0.0001) and improvement in daily restrictions (P=0.0002) were significantly higher, number of mictions at 3, 6 and 12 h after diuretic intake (P<0.001 at all time points) and urgency to urinate (P<0.0001) significantly lower in torasemide- vs. furosemide-treated patients. CONCLUSION: CHF patients treated with torasemide gain a higher benefit in quality of life than furosemide treated patients, due to torasemide's dual effect on both clinical status and social function.

Aged↗

Is puerperal psychosis the same as bipolar manic-depressive disorder? A family study.

The first degree relatives of three groups of women were interviewed; 51 women who had had an illness within two weeks of childbirth and no non-puerperal episodes (the puerperal group), 33 who had puerperal and non-puerperal episodes (the mixed group), and 19 women with bipolar manic-depressive disorder who had non-puerperal episodes only (the manic-depressive group). Over 60% of the affected relatives in all three groups had affective illnesses; in the main these were not puerperal. There were significantly more first degree relatives who had had general practitioner or hospital treatment for psychiatric illness in the puerperal group and in the mixed group than in the manic-depressive group. The puerperal patients had a better prognosis in terms of their illness (number of relapses and time on medication), work functioning and social functioning than the manic-depressive group and the mixed group. The mixed group had an earlier age of onset than the manic-depressive group and the puerperal group. The hypothesis that puerperal psychosis is the same as bipolar manic-depressive disorder was not upheld. The mixed group and the puerperal group were similar with respect to the risk in first degree relatives but differed in terms of prognosis. There were no significant differences between the groups with respect to puerperal episodes in first-degree relatives, although the rate of puerperal psychosis in the first-degree relatives of the puerperal patients was significantly greater than in the general population. The hypothesis that there is a specific genetically determined puerperal psychosis was not supported. Women who had had an illness with an onset within two weeks of childbirth (mixed and puerperal) subsequently had an illness following 36% of their childbirths. In women who had had puerperal and non-puerperal episodes (mixed) the risk was higher; over 50% of deliveries in these women were followed by psychiatric illness.

Adolescent↗

Does rehabilitation meet the needs of care and improve the quality of life of patients with schizophrenia or other chronic mental disorders?

The effectiveness of a rehabilitation intervention (Boston University Model) was investigated in a one-year prospective naturalistic study among 35 clients with mainly psychotic or affective disorders and dependent on mental health care with at least one hospital admission in the past five years. Rehabilitation was successful in goal-attainment after 1 year (46% fully, 34% partly). Although rehabilitation did not make clients less dependent upon care, it decreased the number of needs and had a positive effect on the match between care needed and care provided. No evidence was found for a significant effect of rehabilitation clients' quality of life and functioning, although social functioning became more in line with the seriousness of psychiatric impairment.

Adult↗

Changes in health related quality of life among patients treated for eating disorders.

OBJECTIVE: To prospectively investigate changes in the perception of health-related quality of life (HRQoL) among eating disorder patients after 2 years of treatment and follow-up and clinical predictors of change. METHOD: One hundred and thirty-one consecutive subjects were recruited from an eating disorder outpatient clinic. Subjects completed a generic HRQoL questionnaire, the Short Form-36 (SF-36), as well as the Eating Attitudes Test (EAT-40) to measure symptom severity and the Hospital Anxiety and Depression scale (HAD), at the first visit and after 24 months. RESULTS: Perception of HRQoL, measured by the SF-36, showed significant improvement in all but the role emotional domain after 2 years. The greatest improvements were observed in the physical function and social function domains, followed by mental health and vitality. Despite significant improvement in the summary mental health scale, scores after 2 years of treatment and follow-up were still below normative population values of women aged 18-34. Severity of eating disorder symptoms and presence of anxiety or depression at baseline significantly affected improvement in various SF-36 domains. CONCLUSIONS: Despite improvements in perception of HRQoL, eating disorder patients were more dysfunctional in all domains of the SF-36 even after 2 years of treatment and follow-up compared with women in the general population, and the severity of eating disorder symptoms was correlated with degree of dysfunction.

Adolescent↗