Adaptation and validation of the quality of life assessment of the Cambridge pulmonary hypertension outcome review (CAMPHOR) for Brazil

Corrêa, Ricardo Amorim; Pereira, Mônica Corso; Bizzi, Mariana F; Oliveira, Rafael W. R. de; Rezende, Camila Farnese; Oliveira, Bruna Cristina Marabita Tavares de; Heaney, Alice; McKenna, Stephen P.; Ribeiro‐Oliveira, Antônio

doi:10.1186/s41687-020-00209-6

Cited by 7 publications

(5 citation statements)

References 27 publications

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“…Differences in QoL scores between males and females were found, in contrast to other adaptations studies of the PsAQoL and the original UK English version [3,12,15]. An additional adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR; a measure of HRQL and needs-based QoL) [16] was recently conducted for use with Pulmonary Hypertension patients in Brazil [17]. Significant differences in scores between males and females were found on all CAMP HOR scales, which appeared to be caused by gender differences in ratings of perceived general health.…”

Section: Discussionmentioning

confidence: 85%

Psoriatic Arthritis Quality of Life Questionnaire: translation, cultural adaptation and validation into Brazilian Portuguese language

et al. 2021

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Introduction Psoriatic arthritis (PsA) is a multifaceted inflammatory disease that can cause joint destruction and impair quality of life. The Psoriatic Arthritis Quality of Life Questionnaire (PsAQoL) was the first disease-specific tool for determining the impact of the disease on the quality of life of people with PsA. Objectives The primary objective was to develop and validate a Brazilian Portuguese version of the PsAQoL. Methods The UK PsAQoL was translated into Brazilian Portuguese using two translation panels. This translation then checked for face validity and construct validity with new samples of patients. Finally, a test-retest validation study was conducted with 52 patients with PsA. The survey included the Nottingham Health Profile (NHP) as a comparator instrument. Results Internal consistency and reproducibility were both excellent for the new adaptation (0.91 and 0.90 respectively Scores on the PsAQoL were found to correlate as expected with the comparator measure and the instrument was able to detect differences in score related to perceived severity of PsA, general health status and presence of a flare. Conclusion The Brazilian PsAQoL was found easy to understand and complete and has excellent reliability and construct validity. The new measure will be a valuable new tool for use in routine PsA practice and clinical trials.

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Section: Discussionmentioning

confidence: 85%

Psoriatic Arthritis Quality of Life Questionnaire: translation, cultural adaptation and validation into Brazilian Portuguese language

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“…Whilst this study has a number of strengths, we acknowledge that although patient characteristics were similar to those of well-published PAH cohorts, data from this study originate from a single pulmonary hypertension centre and may therefore be subject to bias. CAMPHOR has also received criticism for being more time intensive than other available pulmonary hypertension QOL measures, however remains the most validated with adaption for use in, but not limited to, the: United States, 39 Australia/New Zealand, 40 Portugal, 41 Germany, 42 Netherlands, 43 Poland, 44 Brazil, 45 Croatia, 46 French/English Canada 47 and Columbia. 48 This provides plentiful opportunity for the external validation of MCID estimates to assess their robustness which is unafforded by other measures at present.…”

Section: Discussionmentioning

confidence: 99%

“…Poland [44], Brazil [45], Croatia [46], French/English Canada [47] and Columbia [48]. This provides plentiful opportunity for the external validation of MCID estimates to assess their robustness which is unafforded by other measures at present.…”

Section: Anchor and Distributional Mcid Estimatesmentioning

confidence: 99%

A minimal clinically important difference measured by the Cambridge Pulmonary Hypertension Outcome Review for patients with idiopathic pulmonary arterial hypertension

et al. 2021

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Several patient-reported outcome measures have been developed to assess health status in pulmonary arterial hypertension (PAH). The required change in instrument scores needed, to be seen as meaningful to the individual, however remain unknown. We sought to identify minimal clinically important differences (MCIDs) in the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) and to validate these against objective markers of functional capacity. MCIDs were established from a discovery cohort (n = 129) of consecutive incident cases of idiopathic PAH with CAMPHOR scores recorded at treatment-naÃ¯ve baseline and 6 â 9 months following PAH therapy. An independent validation cohort (n = 87) was used to verify MCIDs. Concurrent measures of functional capacity relative to CAMPHOR scores were collected. MCIDs were derived using anchor- and distributional-based approaches. In the discovery cohort, mean (SD) age was 54.4 (16.4) years and 64% were female. Most patients (63%) were treated with sequential PAH therapy. Baseline CAMPHOR scores were: Symptoms, 12 (7); Activity, 12 (7) and QoL, 10 (7). PAH treatment resulted in significant improvements in CAMPHOR scores (p < 0.05). CAMPHOR MCIDs averaged across methods for health status improvement were: Symptoms, -4 points; Activity, -4 points and QoL -3 points. CAMPHOR Activity score change >= MCID with PAH treatment was associated with significantly greater improvement in 6-minute walk distance, in both discovery and validation cohorts. In conclusion, CAMPHOR scores are responsive to improvements in functional capacity with PAH treatment. MCIDs in PAH scales may provide useful insights into treatment response in future clinical trials.

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“…Secondary data analyses were performed using NHP data that had been collected to assess the convergent validity of the Brazilian Portuguese QoL-AGHDA and CAMPHOR 4 , 5 from December 2007 to October 2009 and from September 2018 to July 2019, respectively. Patients diagnosed with adult GHD or PAH/CTEPH - which will be called PH below - had completed the relevant questionnaires during clinic visits.…”

Section: Methodsmentioning

confidence: 99%

“…The NHP has been used in two recent Brazilian studies. The measure was administered to patients with adult growth hormone deficiency (GHD) and pulmonary hypertension (PH) as comparator measures in the evaluation of Brazilian adaptations of the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) for GHD and the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for PH 4 , 5 . The availability of these data sets for secondary analysis provided the opportunity to assess the psychometric performance of the NHP in two different Brazilian populations.…”

Section: Introductionmentioning

confidence: 99%

Assessment of the performance of the Brazilian Portuguese Nottingham Health Profile in adult growth hormone deficiency and pulmonary hypertension

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Background: The Nottingham Health Profile (NHP) is a generic measure of perceived distress that has been used widely as an outcome measure in clinical practice and trials. The availability of two Brazilian datasets provided the opportunity to assess the psychometric performance of the NHP in different populations - adult growth hormone deficiency (GHD) and pulmonary hypertension (PH). The purpose of the study was to see how valuable the NHP could be in assessing outcomes in diseases where no disease-specific measures are available. Methods: Secondary analyses were performed with NHP data. Patients diagnosed with adult GHD or PH were administered the NHP during clinic visits on two occasions, two weeks apart. A disease-specific measure of quality of life (QoL) was also administered to the relevant sample of patients on each occasion. Results: The psychometric properties of the NHP were good for both disease groups. As expected, both samples reported high scores on energy level, the PH sample scored high on physical functioning and the GHD sample on emotional reactions. For both samples, most of the NHP sections were able to distinguish between groups of respondents with different ratings of perceived general health. While most sections of the NHP were relatively highly correlated with the QoL measures, pain and sleep did not seem to be important predictors of QoL in either of the samples. Conclusions: The use of the NHP in adult GHD and PH populations in Brazil is not recommended as there are high-quality disease-specific measures available for each disease. However, where no disease-specific measures are available, the NHP can provide good descriptive information of the impact of disease on different patient populations.

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Adaptation and validation of the quality of life assessment of the Cambridge pulmonary hypertension outcome review (CAMPHOR) for Brazil

Cited by 7 publications

References 27 publications

Psoriatic Arthritis Quality of Life Questionnaire: translation, cultural adaptation and validation into Brazilian Portuguese language

Psoriatic Arthritis Quality of Life Questionnaire: translation, cultural adaptation and validation into Brazilian Portuguese language

A minimal clinically important difference measured by the Cambridge Pulmonary Hypertension Outcome Review for patients with idiopathic pulmonary arterial hypertension

Assessment of the performance of the Brazilian Portuguese Nottingham Health Profile in adult growth hormone deficiency and pulmonary hypertension

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