An Audit of the Impact of a Consultation with a Paediatric Dermatology Team
Background: Atopic dermatitis (AD) accounts for 10-20% of referrals to secondary care dermatology, often requiring multiple visits and occupying much valuable time and resources.
Objectives: We audited the usefulness (ease of use, reliability and sensitivity to change) of two simple and easy to use quality of life (QoL) measures, the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI), for assessing the impact on QoL of AD in infants and their families in a routine clinical setting. We also examined the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective.
Methods: The parents of 203 infants (mean age 19·8 months) with AD attending paediatric dermatology clinics completed the DFI and IDQOL. The parents of 50 of these infants completed both questionnaires before first and second consultations.
Results: In the 203 children the mean of both the IDQOL and DFI scores was 8·47 (median 8 and 7 and SD 5·8 and 6·5, respectively). The IDQOL and DFI correlated well (rs = 0·776, P < 0·0001). The parent's assessment of the global severity of AD correlated well with the IDQOL score (rs = 0·636, P < 0·0001) but less well with the DFI (rs = 0·394, P < 0·001). The highest-scoring IDQOL items were itching and scratching, problems at bathtime and time taken to fall asleep. The highest-scoring DFI items were tiredness/exhaustion, sleep loss and emotional distress. In both measures these domains also correlated most strongly with eczema severity. After dermatology consultation the median global severity score, rated by 50 parents, fell from 2 (SD 0·83) to 1 (SD 0·8; 95% confidence interval, CI 0·5-1), the median IDQOL score fell from 8 (SD 5·92) to 5·5 (SD 5·92; 95% CI 2-5·5) and the median DFI score fell from 9 (SD 6·45) to 3 (SD 6·56; 95% CI 2-5·5). In 50 infants the median IDQOL scores for those infants with global AD severity scores of 1, 2 and 3 were 5 (SD 5·65), 8 (SD 4·27) and 14 (SD 5·67), respectively and improved by 10%, 38% and 64%, respectively while the median DFI scores improved by 54%, 56% and 79%, respectively. The most improved IDQOL items were the time taken to get to sleep and difficulty at mealtimes and the most improved DFI domains were tiredness/exhaustion and emotional distress in the parents.
Conclusions: We have provided further important information on the effects of AD on infants and their families using the IDQOL and DFI QoL measures. We demonstrate the usefulness of these measures in routine clinical management of AD and show the beneficial effect for both infants and parents of the initial consultation by a dermatology team in a secondary care setting.
Atopic dermatitis (AD) now affects up to one in five U.K. infants and has a significant impact on the quality of their lives and that of their parents, with around 21-26% being moderately to severely affected. AD accounts for 10-20% of referrals to secondary care dermatology clinics and often requires several visits, occupying much valuable time and resources. Health-related quality of life (HRQoL) questionnaires are increasingly being used by clinicians and researchers as outcome measures for assessing the impact of AD, and their use in conjunction with clinical measures in clinical trials has recently been recommended by the National Institute for Health and Clinical Excellence (http://www.nice.org.uk/TA081guidance). Those that are easy and quick to administer in an outpatient setting such as the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI) can be used as part of routine clinical disease monitoring and provide data useful for justification of the importance of secondary care specialist consultation in the management of AD. Use of these validated disease-specific proxy instruments has demonstrated that AD affects children and their families across all aspects of their life. Itching has been shown to be the worst problem for children and leads to sleep disturbance, which occurs in the majority of infants, 63% of siblings and 64% of parents. Mood changes and difficulties in feeding, dressing and bathing are other problems encountered in infants. The DFI identified impairment in 11 major areas of family functioning, particularly practical care (74%), psychological pressures (71% of parents experience guilt, frustration and exhaustion) and restriction of family life and personal relationships. The IDQOL contains a single question on parental assessment of global clinical severity (PAGS) which is scored separately from the QoL score and has been shown to correlate moderately well with the IDQOL and DFI. Clinical severity assessed by a physician using a modified SCORAD index has been shown to correlate with HRQoL measured by the DFI and Children's Dermatology Life Quality Index (CDLQI) which were also demonstrated to be sensitive to change in clinical severity.
AD is a complex disease to understand and treat and requires appropriate specialist training which is lacking in the general practitioner (GP) and nursing curriculum so that most receive little or no dermatological training. As a consequence, unnecessary referrals of infants with relatively mild AD to secondary care are frequent. This is, of course, a complex issue and other reasons for referral include lack of adequate time for explanation or demonstration of therapy, steroid phobia in the patient or parents (and/or doctor/nurse) and nonadherence with treatment. The British Association of Dermatologists' guidelines for the management of eczema highlight the importance of parental education; however, a study by Chinn et al. found that a 30-min consultation with a dermatology nurse in primary care did not affect eczema severity or HRQoL in the child or family. The severity of eczema in these children is likely to have been much milder than that seen in a hospital setting and consequently there may have been a floor effect, whereby those at the mild end of the spectrum demonstrate a lesser magnitude of change. In contrast, adequate topical therapy demonstration to the parents by a dermatology nurse, in a hospital setting, has been shown to be associated with a reduction in eczema severity in a group of infants with severe eczema. In addition, dermatitis severity and HRQoL in 25 infants and their parents have been shown to improve after consultation with a dermatologist in a paediatric dermatology clinic.
In this study we aimed to audit the usefulness of the IDQOL and DFI in a routine clinical setting for assessing the impact on QoL of AD in infants and their families and to examine the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective. We provide useful data to justify the setting up of specialist AD clinics and the role of the secondary care dermatology team in the management of AD.
Summary and Introduction
Summary
Background: Atopic dermatitis (AD) accounts for 10-20% of referrals to secondary care dermatology, often requiring multiple visits and occupying much valuable time and resources.
Objectives: We audited the usefulness (ease of use, reliability and sensitivity to change) of two simple and easy to use quality of life (QoL) measures, the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI), for assessing the impact on QoL of AD in infants and their families in a routine clinical setting. We also examined the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective.
Methods: The parents of 203 infants (mean age 19·8 months) with AD attending paediatric dermatology clinics completed the DFI and IDQOL. The parents of 50 of these infants completed both questionnaires before first and second consultations.
Results: In the 203 children the mean of both the IDQOL and DFI scores was 8·47 (median 8 and 7 and SD 5·8 and 6·5, respectively). The IDQOL and DFI correlated well (rs = 0·776, P < 0·0001). The parent's assessment of the global severity of AD correlated well with the IDQOL score (rs = 0·636, P < 0·0001) but less well with the DFI (rs = 0·394, P < 0·001). The highest-scoring IDQOL items were itching and scratching, problems at bathtime and time taken to fall asleep. The highest-scoring DFI items were tiredness/exhaustion, sleep loss and emotional distress. In both measures these domains also correlated most strongly with eczema severity. After dermatology consultation the median global severity score, rated by 50 parents, fell from 2 (SD 0·83) to 1 (SD 0·8; 95% confidence interval, CI 0·5-1), the median IDQOL score fell from 8 (SD 5·92) to 5·5 (SD 5·92; 95% CI 2-5·5) and the median DFI score fell from 9 (SD 6·45) to 3 (SD 6·56; 95% CI 2-5·5). In 50 infants the median IDQOL scores for those infants with global AD severity scores of 1, 2 and 3 were 5 (SD 5·65), 8 (SD 4·27) and 14 (SD 5·67), respectively and improved by 10%, 38% and 64%, respectively while the median DFI scores improved by 54%, 56% and 79%, respectively. The most improved IDQOL items were the time taken to get to sleep and difficulty at mealtimes and the most improved DFI domains were tiredness/exhaustion and emotional distress in the parents.
Conclusions: We have provided further important information on the effects of AD on infants and their families using the IDQOL and DFI QoL measures. We demonstrate the usefulness of these measures in routine clinical management of AD and show the beneficial effect for both infants and parents of the initial consultation by a dermatology team in a secondary care setting.
Introduction
Atopic dermatitis (AD) now affects up to one in five U.K. infants and has a significant impact on the quality of their lives and that of their parents, with around 21-26% being moderately to severely affected. AD accounts for 10-20% of referrals to secondary care dermatology clinics and often requires several visits, occupying much valuable time and resources. Health-related quality of life (HRQoL) questionnaires are increasingly being used by clinicians and researchers as outcome measures for assessing the impact of AD, and their use in conjunction with clinical measures in clinical trials has recently been recommended by the National Institute for Health and Clinical Excellence (http://www.nice.org.uk/TA081guidance). Those that are easy and quick to administer in an outpatient setting such as the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI) can be used as part of routine clinical disease monitoring and provide data useful for justification of the importance of secondary care specialist consultation in the management of AD. Use of these validated disease-specific proxy instruments has demonstrated that AD affects children and their families across all aspects of their life. Itching has been shown to be the worst problem for children and leads to sleep disturbance, which occurs in the majority of infants, 63% of siblings and 64% of parents. Mood changes and difficulties in feeding, dressing and bathing are other problems encountered in infants. The DFI identified impairment in 11 major areas of family functioning, particularly practical care (74%), psychological pressures (71% of parents experience guilt, frustration and exhaustion) and restriction of family life and personal relationships. The IDQOL contains a single question on parental assessment of global clinical severity (PAGS) which is scored separately from the QoL score and has been shown to correlate moderately well with the IDQOL and DFI. Clinical severity assessed by a physician using a modified SCORAD index has been shown to correlate with HRQoL measured by the DFI and Children's Dermatology Life Quality Index (CDLQI) which were also demonstrated to be sensitive to change in clinical severity.
AD is a complex disease to understand and treat and requires appropriate specialist training which is lacking in the general practitioner (GP) and nursing curriculum so that most receive little or no dermatological training. As a consequence, unnecessary referrals of infants with relatively mild AD to secondary care are frequent. This is, of course, a complex issue and other reasons for referral include lack of adequate time for explanation or demonstration of therapy, steroid phobia in the patient or parents (and/or doctor/nurse) and nonadherence with treatment. The British Association of Dermatologists' guidelines for the management of eczema highlight the importance of parental education; however, a study by Chinn et al. found that a 30-min consultation with a dermatology nurse in primary care did not affect eczema severity or HRQoL in the child or family. The severity of eczema in these children is likely to have been much milder than that seen in a hospital setting and consequently there may have been a floor effect, whereby those at the mild end of the spectrum demonstrate a lesser magnitude of change. In contrast, adequate topical therapy demonstration to the parents by a dermatology nurse, in a hospital setting, has been shown to be associated with a reduction in eczema severity in a group of infants with severe eczema. In addition, dermatitis severity and HRQoL in 25 infants and their parents have been shown to improve after consultation with a dermatologist in a paediatric dermatology clinic.
In this study we aimed to audit the usefulness of the IDQOL and DFI in a routine clinical setting for assessing the impact on QoL of AD in infants and their families and to examine the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective. We provide useful data to justify the setting up of specialist AD clinics and the role of the secondary care dermatology team in the management of AD.
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