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Background: The FROM-16 is a generic family quality of life (QoL) instrument that measures the QoL impact of patients' disease on their family members/partners. The study aimed to assess the responsiveness of FROM-16 to change and determine Minimal Important Change (MIC)., Methods: Responsiveness and MIC for FROM-16 were assessed prospectively with patients and their family members recruited from outpatient departments of the University Hospital Wales and University Hospital Llandough, Cardiff, United Kingdom. Patients completed the EQ-5D-3L and a global severity question (GSQ) online at baseline and at 3-month follow-up. Family members completed FROM-16 at baseline and a Global Rating of Change (GRC) in addition to FROM-16 at follow-up. Responsiveness was assessed using the distribution-based (effect size-ES, standardized response mean -SRM) and anchor-based (area under the receiver operating characteristics curve ROC-AUC) approaches and by testing hypotheses on expected correlation strength between FROM-16 change score and patient assessment tools (GSQ and EQ-5D). Cohen's criteria were used for assessing ES. The AUC ≥ 0.7 was considered a good measure of responsiveness. MIC was calculated using anchor-based (ROC analysis and adjusted predictive modelling) and distribution methods based on standard deviation (SD) and standard error of the measurement (SEM)., Results: Eighty-three patients with 15 different health conditions and their relatives completed baseline and follow-up questionnaires and were included in the responsiveness analysis. The mean FROM-16 change over 3 months = 1.43 (SD = 4.98). The mean patient EQ-5D change over 3 months = -0.059 (SD = 0.14). The responsiveness analysis showed that the FROM-16 was responsive to change (ES = 0.2, SRM = 0.3; p < 0.01). The ES and SRM of FROM-16 change score ranged from small (ES = 0.2; SRM = 0.3) for the distribution-based method to large (ES = 0.8, SRM = 0.85) for anchor-based methods. The AUC value was above 0.7, indicating good responsiveness. There was a significant positive correlation between the FROM-16 change scores and the patient's disease severity change scores (p < 0.001). The MIC analysis was based on data from 100 family members of 100 patients. The MIC value of 4 was suggested for FROM-16., Conclusions: The results of this study confirm the longitudinal validity of FROM-16 which refers to the degree to which an instrument is able to measure change in the construct to be measured. The results yield a MIC value of 4 for FROM-16. These psychometric attributes of the FROM-16 instrument are useful in both clinical research as well as clinical practice., (© 2024. The Author(s).)

Background: Clinical decision making in dermatology is a complex process and might be influenced by a wide range of nonclinical factors., Objectives: The aim of this study was to explore the role of nonclinical influences, beyond diagnosis and severity, on clinical decision making in dermatology., Methods: Semi-structured qualitative interviews were conducted with 46 clinicians working in departments of dermatology of nine different hospitals in Wales. Interviews were audio-recorded and later transcribed and their contents analysed., Results: Nonclinical factors influencing patient management decisions in dermatology that were identified related to patients, clinicians and practice characteristics. Patient-related factors included place of residence, socioeconomic circumstances, education and intelligence, ethnicity, age, treatment adherence, expectations from treatment, quality of life, concerns and worries, difficult patients, and family members or friends. Clinician-related factors included time constraints in clinic, clinicians' personal circumstances, relationship with colleagues, and relationship with pharmaceutical companies. Practice-related factors included working in private practice, cost of treatment to the National Health Service (NHS), prescribing bureaucracy, and availability of treatment service in the work place. There was a difference between the consultants' views and those of the other clinicians over the impact of pharmaceutical companies on clinicians' prescribing and the awareness of treatment costs to the NHS. Most of the factors identified could potentially influence the clinicians' decision-making process subconsciously. Some clinicians highlighted that these factors are untaught in the medical curriculum, and are usually ignored in clinical guidelines, and therefore represent a challenge to the practice of evidence-based medicine., Conclusions: This study has described one aspect of the reality of medical decision making beyond the conventional evidence-based guidelines approach. Proper understanding of nonclinical influences on decision making is of paramount importance for the best patient-centred treatment outcomes., (© 2010 The Authors. Journal Compilation © 2010 British Association of Dermatologists.)

Background: Dermatologists' assessments of how their patients' lives are affected by the skin disease are of importance for informing clinical decisions. However, there is no information about how often quality of life (QoL) issues are discussed in outpatient consultations., Objective: To examine the relationship between the extent of QoL-related discussion during dermatology outpatient consultations, and the current impact of the disease on patients' lives., Patients and Methods: A total of 238 consultations were observed in a teaching dermatology outpatient department for QoL-related discussion initiated by either the clinician or the patient. Following the consultation, all patients were posted a Dermatology Life Quality Index (DLQI) questionnaire to complete and return within 1 week., Results: QoL discussion was absent in 40% of consultations. Consultants initiated the fewest QoL discussions with patients, and nurses the most (P < 0.0001). One hundred and twenty-eight (54%) patients returned the DLQI, 114 (48%) of which were evaluable. The mean score was 5.6, SD +/- 6.6, median 3, range 0-29. The mean DLQI score for the patients with whom there was no QoL discussion was 4.0 +/- 4.7, n = 55, compared with the mean DLQI score for patients with whom QoL was discussed 6.8 +/- 7.2, n = 59 (P < 0.001)., Conclusion: This study demonstrates that little information concerning QoL is elicited during dermatology outpatient consultations.

Basal cell carcinoma (BCC) is the most common type of skin cancer and the incidence of BCC is expected to rise, with increased demand on dermatology resources. Little is known of the effect on people's lives of having skin cancer. The aim of this study was to quantify the handicap caused gy basal cell carcinomas before and after therapy. Forty-four patients (22 males, mean age = 65 yrs, range = 35-81 yrs) with 48 BCCs were recruited and 37 patients completed the study. Each patient completed the UK Sickness Impact Profile (UKSIP) and the Dermatology Life Quality Index (DLQI) at the initial visit to the dermatology clinic, 1 week after treatment and 3 months after treatment. Lesions had been present for a mean of 25 months (range = 1-240 months), their mean diameter was 9.6mm (range = 3-35mm) and the sites were head and neck (79%), trunk (17%) and limbs (4%). There was no relationship between the quality of life score and size of lesion. Overall the scores at presentation were very low, rising 1 week after treatment and falling to below the initial scores at 3 months (mean UKSIP 0.4%, 0.7%, 0.13%; mean DLQI 5.3% 8.7%, 1.2%). BCCs cause little handicap. This may explain the delay in seeking medical attention and should be considered in planning public health education about BCCs.

The purpose of this study was to examine and compare the reliability and validity of two acne-specific measures, the Cardiff Acne Disability Index (CADI), the Acne Disability Index (ADI) and a general health status instrument, the United Kingdom Sickness Impact Profile (UKSIP). The test-retest reliability was carried out for the UKSIP, ADI and CADI with an interval of 10 days in 70 patients with acne. The correlation coefficient for the overall UKSIP score was high (r = 0.99, p < 0.001) for the CADI was 0.96 (p < 0.001) and for the ADI was 0.98 (p < 0.001). Individual category score correlations in the UKSIP and ADI were greater than 0.83. Tests of internal consistency of the instruments scored highly. A further 100 patients with acne and 50 controls completed all three instruments. The overall UKSIP mean score of patients was 5.6 (sd = 4.7) and of controls was 0.45. The ADI mean patient score was 40.3%, controls 17.6%. The CADI mean patient score was 42.1%, controls 13.2%. The CADI was the only instrument that correlated with the clinical acne severity score (p < 0.05); the UKSIP score correlated with the CADI score (p < 0.05) but not with the ADI score. This study has established aspects of the reliability and validity of the UKSIP, the ADI and the CADI.