Measuring the impact of burn scarring on health-related quality of life: Development and preliminary content validation of the Brisbane Burn Scar Impact Profile (BBSIP) for children and adults

INTRODUCTION No burn-scar specific, health-related quality of life (HRQOL) measure exists. This study aimed to develop a patient-reported, evaluative HRQOL measure to assess the impact of burn scarring in children and adults. METHOD Semi-structured interviews, content validation surveys, and cognitive interviews were used to develop and test content validity of a new measure - the Brisbane Burn Scar Impact Profile (BBSIP). RESULTS Participants comprised Australian adults (n=23) and children (n=19) with burn scarring; caregivers of children with burn scarring (n=28); and international scar management experts (n=14). Items distinct from other burn scar measures emerged. Four versions of the BBSIP were developed; one for children aged 8-18 years, one for adults, one for caregivers (as proxies for children aged less than 8-years), and one for caregivers of children aged 8-18 years. Preliminary content validity of the BBSIP was supported. Final items covered physical and sensory symptoms; emotional reactions; impact on social functioning and daily activities; impact of treatment; and environmental factors. CONCLUSION The BBSIP was developed to assess burn-scar specific HRQOL and will be available at http://www.coolburns.com.au under a creative commons license. Further testing is underway.

Reliability and validation of a Brazilian version of the Oral Health Impact Profile for assessing edentulous subjects

The aims of this study were to evaluate the reliability and to validate a Brazilian version of Oral Health Impact Profile for assessing edentulous subjects (OHIP-EDENT), an inventory for measuring oral health-related quality of life of edentulous subjects. The sample comprised 65 complete denture wearers (23 men, mean age of 69.1 +/- 10.3 years). The translated OHIP-EDENT was applied on two occasions with a washout period of 3 months. Reliability was assessed by an internal consistency analysis and a test-retest approach. A preliminary validation process was conducted by a qualitative approach/interview. Results of internal consistency showed a Cronbach's alpha of 0.86 or 0.90 for the first or second appointment respectively. Through the test-retest analysis, an intra-class correlation coefficient of 0.57 was found, and individual answers reflected a broad range of agreement. Interviewed volunteers (n = 6) comprehended most questions well. In conclusion, the Brazilian version of OHIP-EDENT is adequate for assessing the oral health-related quality of life for edentulous subjects.

Psychometric Properties of the Oral Health Impact Profile and New Methodological Approach

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Psychometric properties of the oral health impact profile and new methodological approach

Objective: Evaluate the validity, reliability, and factorial invariance of the complete Portuguese version of the Oral Health Impact Profile (OHIP) and its short version (OHIP-14). Methods: A total of 1,162 adults enrolled in the Faculty of Dentistry of Araraquara/UNESP participated in the study; 73.1% were women; and the mean age was 40.7 ± 16.3 yr. We conducted a confirmatory factor analysis, where χ2/df, comparative fit index, goodness of fit index, and root mean square error of approximation were used as indices of goodness of fit. The convergent validity was judged from the average variance extracted and the composite reliability, and the internal consistency was estimated by Cronbach standardized alpha. The stability of the models was evaluated by multigroup analysis in independent samples (test and validation) and between users and nonusers of dental prosthesis. Results: We found best-fitting models for the OHIP-14 and among dental prosthesis users. The convergent validity was below adequate values for the factors “functional limitation” and “physical pain” for the complete version and for the factors “functional limitation” and “psychological discomfort” for the OHIP-14. Values of composite reliability and internal consistency were below adequate in the OHIP-14 for the factors “functional limitation” and “psychological discomfort.” We detected strong invariance between test and validation samples of the full version and weak invariance for OHIP-14. The models for users and nonusers of dental prosthesis were not invariant for both versions. Conclusion: The reduced version of the OHIP was parsimonious, reliable, and valid to capture the construct “impact of oral health on quality of life,” which was more pronounced in prosthesis users.

A visual profile of Queensland Indigenous children

PURPOSE: Little is known about the prevalence of refractive error, binocular vision, and other visual conditions in Australian Indigenous children. This is important given the association of these visual conditions with reduced reading performance in the wider population, which may also contribute to the suboptimal reading performance reported in this population. The aim of this study was to develop a visual profile of Queensland Indigenous children. METHODS: Vision testing was performed on 595 primary schoolchildren in Queensland, Australia. Vision parameters measured included visual acuity, refractive error, color vision, nearpoint of convergence, horizontal heterophoria, fusional vergence range, accommodative facility, AC/A ratio, visual motor integration, and rapid automatized naming. Near heterophoria, nearpoint of convergence, and near fusional vergence range were used to classify convergence insufficiency (CI). RESULTS: Although refractive error (Indigenous, 10%; non-Indigenous, 16%; p = 0.04) and strabismus (Indigenous, 0%; non-Indigenous, 3%; p = 0.03) were significantly less common in Indigenous children, CI was twice as prevalent (Indigenous, 10%; non-Indigenous, 5%; p = 0.04). Reduced visual information processing skills were more common in Indigenous children (reduced visual motor integration [Indigenous, 28%; non-Indigenous, 16%; p < 0.01] and slower rapid automatized naming [Indigenous, 67%; non-Indigenous, 59%; p = 0.04]). The prevalence of visual impairment (reduced visual acuity) and color vision deficiency was similar between groups. CONCLUSIONS: Indigenous children have less refractive error and strabismus than their non-Indigenous peers. However, CI and reduced visual information processing skills were more common in this group. Given that vision screenings primarily target visual acuity assessment and strabismus detection, this is an important finding as many Indigenous children with CI and reduced visual information processing may be missed. Emphasis should be placed on identifying children with CI and reduced visual information processing given the potential effect of these conditions on school performance.

Quality of life in chronic fatigue syndrome

Whilst the debilitating fatigue experienced in patients suffering from Chronic Fatigue Syndrome (CFS) results in a subjective marked impairment in functioning, little research has investigated the impact of this disorder on quality of life. Forty-seven subjects with a confirmed diagnosis of CFS and 30 healthy controls were compared using the Sickness Impact Profile (SIP). A subgroup of subjects were interviewed regarding the impact CFS has had on their social and family relationships, work and recreational activities. Results from both the SIP and the interview revealed that CFS subjects had significantly impaired quality of life, especially in areas of social functioning. These findings highlight the importance of addressing the social isolation and loss of role functioning experienced by CFS sufferers.

A new instrument for measuring anticoagulation-related quality of life: development and preliminary validation.

BACKGROUND: Anticoagulation can reduce quality of life, and different models of anticoagulation management might have different impacts on satisfaction with this component of medical care. Yet, to our knowledge, there are no scales measuring quality of life and satisfaction with anticoagulation that can be generalized across different models of anticoagulation management. We describe the development and preliminary validation of such an instrument - the Duke Anticoagulation Satisfaction Scale (DASS). METHODS: The DASS is a 25-item scale addressing the (a) negative impacts of anticoagulation (limitations, hassles and burdens); and (b) positive impacts of anticoagulation (confidence, reassurance, satisfaction). Each item has 7 possible responses. The DASS was administered to 262 patients currently receiving oral anticoagulation. Scales measuring generic quality of life, satisfaction with medical care, and tendency to provide socially desirable responses were also administered. Statistical analysis included assessment of item variability, internal consistency (Cronbach's alpha), scale structure (factor analysis), and correlations between the DASS and demographic variables, clinical characteristics, and scores on the above scales. A follow-up study of 105 additional patients assessed test-retest reliability. RESULTS: 220 subjects answered all items. Ceiling and floor effects were modest, and 25 of the 27 proposed items grouped into 2 factors (positive impacts, negative impacts, this latter factor being potentially subdivided into limitations versus hassles and burdens). Each factor had a high degree of internal consistency (Cronbach's alpha 0.78-0.91). The limitations and hassles factors consistently correlated with the SF-36 scales measuring generic quality of life, while the positive psychological impact scale correlated with age and time on anticoagulation. The intra-class correlation coefficient for test-retest reliability was 0.80. CONCLUSIONS: The DASS has demonstrated reasonable psychometric properties to date. Further validation is ongoing. To the degree that dissatisfaction with anticoagulation leads to decreased adherence, poorer INR control, and poor clinical outcomes, the DASS has the potential to help identify reasons for dissatisfaction (and positive satisfaction), and thus help to develop interventions to break this cycle. As an instrument designed to be applicable across multiple models of anticoagulation management, the DASS could be crucial in the scientific comparison between those models of care.

Measuring the health-related quality of life of people with ischaemic heart disease.

Objectives—To inform researchers and clinicians about the most appropriate generic and disease specific measures of health related quality of life for use among people with ischaemic heart disease. Methods—MEDLINE and BIDS were searched for research papers which contained a report of at least one of the three most common generic instruments or at least one of the five disease specific instruments used with ischaemic heart disease patients. Evidence for the validity, reliability, and sensitivity of these instruments was critically appraised. Results—Of the three generic measures—the Nottingham health profile, sickness impact profile, and short form 36 (SF-36)—the SF-36 appears to offer the most reliable, valid, and sensitive assessment of quality of life. However, a few of the SF-36 subscales lack a sufficient degree of sensitivity to detect change in a patient’s clinical condition. According to the best available evidence, the quality of life after myocardial infarction questionnaire should be preferred to the Seattle angina questionnaire, the quality of life index cardiac version, the angina pectoris quality of life questionnaire, and the summary index. Overall, research on disease specific measures is sparse compared to the number of studies which have investigated generic measures. Conclusions—An assessment of the quality of life of people with ischaemic heart disease should comprise a disease specific measure in addition to a generic measure. The SF-36 and the quality of life after myocardial infarction questionnaire (version 2) are the most appropriate currently available generic and disease specific measures of health related quality of life, respectively. Further research into the measurement of health related quality of life of people with ischaemic heart disease is required in order to address the problems (such as lack of sensitivity to detect change) identified by the review.

Health-related quality of life in Huntington's disease: a comparison of two generic instruments, SF-36 and SIP

Whereas several clinical endpoints in monitoring the response to treatment in patients with Huntington's disease (HD) have been explored, there has been a paucity of research in the quality of life in such patients. The aim of this study was to validate the use of two generic health-related quality of life instruments (the Short Form 36 health survey questionnaire [SF-36] and the Sickness Impact Profile [SIP]) and to evaluate their psychometric properties. We found that both instruments demonstrated acceptable convergent validity and reliability for patients and carers. However, there was an advantage in using the SF-36 because of its more robust construct validity and test-retest reliability; furthermore, motor symptoms appeared to influence some strictly nonmotor dimensions of the SIP. On a pragmatic level, the SF-36 is shorter and quicker to administer and, therefore, easier for patients at various stages of the disease to complete. Thus, the SF-36 would appear to be the recommended instrument of choice for patients with HD and their carers, although further work needs to be done to investigate the sensitivity of this instrument longitudinally. (C) 2004 Movement Disorder Society.

Will he get back to normal? survival and functional status after intensive care therapy

The study aim was to address healthcare workers’ and patients’ questions about the likely level of recovery at 6 months of patients admitted to an Australian intensive care unit (ICU). Ninety-three consecutive, eligible adults were identified and followed prospectively. Severity of illness on admission was assessed using Acute Physiological and Chronic Health Evaluation (APACHE II), while functional status at 6 months was evaluated using the Sickness Impact Profile (SIP). Cumulative mortality was 25%. Admission severity of illness was associated with survival at 6 months (P≤0.001). Fifty-one (78%) of the 70 survivors were interviewed. Admission severity of illness scores correlated with functional status at 6 months (r=0.34, P=0.01), a finding reported in only one other study. More than half of those interviewed had returned to near pre-admission functional status. Those with poor functional status included high proportions of people with chronic illness and head injury. Overall, physical recovery was more complete than psychosocial recovery. The findings provide useful information for addressing questions relating to physical and psychosocial recovery, appetite, sleep patterns and return to work post discharge.

Functional status after bloodstream infection : the survivors' trajectory

There is very little information about the quality of survival for patients after bacterial and fungal bloodstream infections. This study aimed to describe the functional status and level of activities of daily living for a group of survivors of these infections. A prospective exploratory design was used to track adults for 6 months after onset of infection. Survivors were assessed for reduced or full health status. Telephone interviews, using the London Handicap Scale and the Sickness Impact Profile, provided self-assessed functional status for those able to participate; 165 adults were tracked. Before infection, only 25% of adults had an active malignancy and one-tenth required a high level of assistance with activities of daily living. Six months after infection, half of survivors had reduced health and many had not returned to their normal functional activity level. There was considerable continued reduced health in survivors, demonstrating that not only do bloodstream infections result in high short-term mortality but also in considerable longer term morbidity and profound alteration in functional health status for many survivors.

Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention : results from the PediQUEST randomized controlled trial.

This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).

Qualidade de vida em urticária crônica: inquérito em ambulatório público universitário, Botucatu (Brasil)

OBJETIVO: Avaliar o impacto da urticária crônica na qualidade de vida dos pacientes de ambulatório universitário a partir do questionário DLQI (Dermatology Life Quality Index). MÉTODOS: Inquérito sobre o impacto na qualidade de vida infligido pela urticária crônica a partir do questionário DLQI validado para a língua portuguesa. Pacientes foram entrevistados durante suas consultas em ambulatório especializado, entre maio de 2009 e maio de 2010, em serviço público brasileiro (Botucatu-SP). Os escores do DLQI foram analisados segundo subgrupos: idade, gênero, escolaridade, tempo de doença e presença de angioedema. RESULTADOS: Foram entrevistados 100 pacientes com urticária crônica. Predominou o gênero feminino (86%), a idade média foi de 41,8 anos, duração média da doença foi de seis anos e angioedema ocorreu em 82% dos pacientes. O escore médio do DLQI foi de 13,5, caracterizando grave impacto à qualidade de vida, superior a hanseníase, psoríase, eczema atópico e carcinoma basocelular. Presença de angioedema se associou a maiores escores: 14,5 x 9,9 (p < 0,01). Pacientes do gênero feminino referiram maior impacto quanto ao vestuário, já o gênero masculino referiu quanto ao tratamento, trabalho e estudo (p < 0,05). CONCLUSÃO: Urticária crônica inflige grave comprometimento da qualidade de vida nos pacientes avaliados em serviço universitário brasileiro, especialmente nos portadores de angioedema.

Aspectos físicos e mentais na qualidade de vida de pacientes com doença de Parkinson idiopática

A doença de Parkinson (DP) é um distúrbio crônico e progressivo, caracterizado pela degeneração de neurônios dopaminérgicos da substantia nigra mesencefálica. A lesão das vias subcorticais, em especial a nigro-estriato-palidal, é particularmente comum e ocasiona uma série de sinais e sintomas incapacitantes. O objetivo deste trabalho foi analisar a qualidade de vida (QV) relacionada à saúde de sujeitos com DP e compará-la à de indivíduos controles saudáveis. Foram avaliados 40 sujeitos com idades entre 61 e 83 anos, de ambos os sexos, que foram divididos em dois grupos: grupo Parkinson (n=21), composto por sujeitos com DP idiopática, e grupo controle (n=19), de indivíduos sem distúrbios neurodegenerativos. Para a coleta de dados, foi utilizada a versão brasileira do questionário Brasil SF-36. Os resultados foram analisados estatisticamente, com nível de significância fixado em 1%. Os sujeitos do grupo Parkinson apresentaram escores significativamente mais baixos do que os do grupo controle, tanto no domínio físico quanto no mental, medidos pelo SF-36. Essa baixa QV provavelmente é explicada pela co-ocorrência de fenômenos neurodegenerativos e do sofrimento psíquico gerado pela doença e pelo estigma que ela produz. Abordagens interdisciplinares devem ser estimuladas a pacientes com DP, com o objetivo de melhorar sua qualidade de vida e postergar o declínio físico e mental inerente às condições degenerativas.