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Defining patient‐centered research priorities in pediatric dermatology
Abstract
Background/objectives:
Patient and caregiver perspectives are critical in understanding dermatologic disease impact, presentation, and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC), a group of patient representatives and parents of children with cutaneous disease, pursued a multistep, iterative, consensus-building process to identify comprehensive, high-priority research needs.
Methods:
Building on discussions at the 2020 PeDRA Annual Conference, a research prioritization survey was developed and completed by PtAC members. Survey themes were aggregated and workshopped by the PtAC through a series of facilitated calls. Emerging priorities were refined in collaboration with additional PeDRA patient community members at the 2021 PeDRA Annual Conference. Subsequently, a final actionable list was agreed upon.
Results:
Fourteen PtAC members (86.7% female) representing patients with alopecia areata, atopic dermatitis, vascular birthmarks, congenital melanocytic nevi, ectodermal dysplasias, epidermolysis bullosa, Gorlin syndrome, hidradenitis suppurativa, ichthyosis, pemphigus, psoriasis, Sturge-Weber syndrome, and pachyonychia congenita completed the survey. Following serial PtAC meetings, 60 research needs were identified from five domains: psychosocial challenges, health care navigation/disease management, causes/triggers, treatments to preserve or save life, and treatments to preserve or save quality of life.
Conclusions:
Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient-centric initiatives and investigations.
... In the consensus-based European guidelines for treating AD, patient education and the cultivation of self-management skills are baseline recommendations (8). As such, patients often find self-management complex, thus frequently seeking patient-centered professional support (1,9,10). In a qualitative study, patients expressed a desire for guided participation in agenda-setting during consultations, emphasizing their need for self-management support (11). ...
Purpose: Patients with atopic dermatitis (AD) require both skills and support to effectively manage life with the disease. Here, we developed an agenda-setting tool for consultations with patients with AD to establish a collaborative agenda that enhances patient involvement and prioritizes on self-management support.
Materials and methods: Using the design thinking process, we included 64 end-users (patients and healthcare professionals (HCPs)) across the different phases of design thinking. We identified seven overall categories that patients find important to discuss during consultations, which informed the development of a tool for co-creating a consultation agenda (conversation cards, CCs).
Results: Through iterative user testing of the CCs, patients perceived the cards as both inspiring and an invitation from HCPs to openly discuss their needs during consultations. Healthcare professionals have found the CCs easy to use, despite the disruption to the typical consultation process.
Conclusion: In summary, the CCs provide a first-of-its-kind agenda-setting tool for patients with AD. They offer a simple and practical method to establishing a shared agenda that focuses on the patients’ needs and are applicable within real-world clinical settings.
... 3 In a systematic review of the values and preferences of patients and caregivers to patients with AD, more than half of the identified patientcentred needs fall into the domains of psychological challenges and disease management, supporting the claim that knowledge is lacking on how to empower patients in a supportive environment while offering them the knowledge and skills to manage their disease. 4 Self-management support for patients diagnosed with AD and other chronic conditions can increase self-management skills and alleviate the burden of disease experienced by individuals and their families. 5,6 In general, self-management support programmes, often referred to as therapeutic patient education in AD research, 5 consist of lectures on AD pathophysiology, trigger factors, the itch-scratch cycle, and therapeutic options. ...
Patients with a chronic skin disease, eg, atopic dermatitis, need self-management skills to increase their quality of life. We explored patients’ needs for self-management support from healthcare professionals and how these needs can be met in a dermatology setting. Interpretive description methodology was chosen for iterative data collection and analysis of qualitative interviews with patients with atopic dermatitis. Two mutually dependent themes were found to be supportive of patients’ self-management. Personal and disease-related recognition was fundamental to successful support. However, guidance for agenda-setting from healthcare professionals was also needed on the wide range of topics that could be covered in the consultation based on individual needs. Patients need self-management support in addition to what can be found with family, friends, or peers. It is crucial that the support is delivered with an appreciative approach by healthcare professionals with profound knowledge of atopic dermatitis. Equally important is guidance towards agenda-setting, a way to co-construct the consultation with a clear focus on the specific patient's needs.
In this guideline we provided an up-to-date, evidence-based recommendations for the diagnosis and surveillance of all symptoms in children and adults with either basal cell naevus syndrome (BCNS), a clinical suspicion of BCNS, or a parent with BCNS.
People with lived experience of mental health problems as both consumers and carers can bring significant expertise to the research process. However, the methods used to gather this information and their subsequent results can vary markedly. This paper describes the methods for two virtual World Cafés held to gather data on consumer and carer priorities for mental health research. Several methodological processes and challenges arose during data collection, including the achieved recruitment for each group (n = 4, n = 7) falling significantly short of the target number of 20 participants per group. This led to departures from planned methods (i.e., the use of a single ‘room’, rather than multiple breakout rooms). Despite this, the participants in the virtual World Cafés were able to generate over 200 ideas for research priorities, but not identify agreed-upon priorities. Virtual World Cafés can quickly generate a significant volume of data; however, they may not be as effective at generating consensus.
Acne, atopic dermatitis (AD), and psoriasis are all chronic dermatologic conditions that greatly impact the lives of pediatric patients and their caregivers. The visible nature of these diseases negatively affects the self-image of children early in life as well as their relationships with their families and peers. Physicians recognize the importance of addressing both the physical and mental symptoms of their patients but are currently not equipped with clear guidelines to manage long-term psychosocial comorbidities in pediatric dermatologic patients. A PubMed and Google Scholar search of key words was conducted to explore self-image in pediatric patients with acne, AD, and psoriasis. Chronic skin diseases put pediatric patients at risk for strained family relationships, poor self-image, psychiatric comorbidities, stigmatization, and eventual suicidal behavior. A limitation of this study is a lack of a validated measure of quality of life in the pediatric population that fulfills enough criteria to evaluate long term quality of life in children and adults. Possible management options, including connecting patients with the same diagnosis and allocating resources to parents and teachers to better understand these chronic skin conditions, may provide pediatric patients with the support they need to develop resilience in the face of these challenges.
Gorlin syndrome (GS) is a risk factor for early basal cell carcinomas (BCCs), although its prevalence of fewer than 1 in 30,000 individuals limits existing literature. There are sparse pediatric GS studies beyond case reports, creating a knowledge gap regarding childhood cutaneous findings and sequelae, including BCC age at onset, quantity, treatments, and impact. Herein, we describe a global survey to illustrate the clinical presentation, childhood perspectives, and BCC management trends for pediatric GS to improve the understanding and inform patient care.
The overall objective of this guideline is to provide up-to-date, evidence-based recommendations for the diagnosis and surveillance of all symptoms of children and adults with either basal cell nevus syndrome (BCNS), a clinical suspicion of BCNS, or a parent with BCNS. In the last two groups the guidelines should be followed until the diagnosis of BCNS can be rejected with certainty. The guideline aims to:
- Update and expand on the previous guidelines by an appraisal of all relevant literature from January 2011 up to January 2021
- Address important, practical, clinical questions relating to the primary guideline objective
- Provide guideline recommendations
- Discuss potential developments and future directions
Background:
Congenital melanocytic naevi (CMN) can have a great impact on patients' lives due to perceived stigmatization and the risk of melanoma development and neurological complications. Development of a core outcome set for care and research of CMN will allow standard reporting of outcomes. This will enable comparison of outcomes, allowing professionals to offer advice about best management options. In previous research, stakeholders (patients, parents, and professionals) reached consensus on the core domains of the core outcome set. To select the appropriate measurement instruments, the domains should be specified by outcomes.
Objectives:
To reach consensus on the specific core outcomes describing the core domains pertaining to both CMN clinical care and research.
Methods:
A list of provisional outcomes, obtained earlier, was critically reviewed by the OCOMEN research team and by relevant stakeholders through an online questionnaire, to refine this list and provide clear definitions for every outcome. When needed, discussion with individual participants was undertaken over the telephone or by e-mail. During an online consensus meeting, stakeholders discussed the inclusion of potential outcomes. After the meeting, participants voted for inclusion of outcomes in two rounds.
Results:
Forty-four stakeholders from nineteen countries participated in the study. Nine core outcomes were included in the core outcome set relative to clinical care and ten core outcomes for research.
Conclusion:
These core outcomes will enable standard reporting in future care and research of CMN. This study facilitates the next step of core outcome set development: selecting the appropriate measurement instruments for every outcome.
Recent advances in understanding the complex pathogenesis of atopic dermatitis (AD, also known as eczema or atopic eczema), coupled with the development of new treatments, have led to increased interest from multiple stakeholders. There is a need to prioritize areas for research to inform a coordinated approach to advancing science and patient care. We sought to fill a gap in the literature, specifically from the perspective of clinicians involved in AD patient care and research.
Background:
Pediatric skin disorders can affect children's self-esteem, relationships with caregivers and peers, and performance in school and activities.
Objective:
This review describes common pediatric congenital and acquired dermatologic disorders and the impact that these disorders can have on children's self-esteem.
Methods:
A review of current, English-language literature was conducted with use of the PubMed database. Search terms included atopic dermatitis, acne, infantile hemangiomas, port wine stains, congenital melanocytic nevi, hidradenitis suppurativa, and self-esteem.
Results:
During infancy and toddlerhood, skin disorders such as infantile hemangiomas primarily affect the attachment between child and caregiver. School-aged children with port wine stains and atopic dermatitis report increased bullying, teasing, and social isolation. Acne and hidradenitis typically affect older children and teens and these conditions are associated with increased risks of depression and suicidal ideation. Effective management of these conditions has been shown to increase patients' self-esteem.
Conclusion:
Pediatric dermatologic disorders impact self-esteem throughout childhood. In addition to the surgical and medical management of these disorders, clinicians can also take an active role in the assessment and improvement of the psychosocial impact of these skin disorders.
Background
Patients with moderate-to-severe atopic eczema (AE) often require photo- or systemic immunomodulatory therapies to induce disease remission and maintain long-term control. The current evidence to guide clinical management is small, despite the frequent and often off-label use of these treatments. Registries of patients on photo- and systemic immunomodulatory therapies could fill this gap, and the collection of a core set concerning these therapies in AE will allow direct comparisons across registries as well as data sharing and pooling.Using an eDelphi approach, the international TREatment of ATopic eczema (TREAT) Registry Taskforce aims to seek consensus between key stakeholders internationally on a core set of domains and domain items for AE patient registries with a research focus that collect data of children and adults on photo- and systemic immunomodulatory therapies. Methods/designParticipants from six stakeholder groups will be invited: doctors, nurses, non-clinical researchers, patients, as well as industry and regulatory body representatives. The eDelphi will comprise three sequential online rounds, requesting participants to rate the importance of each proposed domain and domain items. Participants will be able to add domains and domain items to the proposed list in round 1. A final consensus meeting will be held with representatives of each stakeholder group. DiscussionIdentifying a uniform core set of domains and domain items to be captured by AE patient registries will increase the utility of individual registries, and provide greater insight into the effectiveness, safety and cost-effectiveness of photo- and systemic immunomodulatory therapies to guide clinical management across dermatology centres and country borders. Trial registrationNot applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database.
Background
Each individual psoriasis patient has different expectations and goals for biological treatment, which may differ from those of the clinician. As such, a patient-centred approach to treatment goals remains an unmet need in psoriasis.Objective
The aim of this study was to review available data on patients’ and physicians’ decision criteria and expectations of biological treatment for moderate-to-severe psoriasis with the aim of developing a core set of questions for clinicians to ask patients routinely to understand what is important to them and thus better align physicians’ and patients’ expectations of treatment with biologics and its outcomes.MethodsA literature search was conducted to identify key themes and data gaps. Aspects of treatment relevant when choosing a biological agent for an individual patient were identified and compared to an existing validated instrument. A series of questions aimed at helping the physician to identify the particular aspects of treatment that are recognised as important to individual psoriasis patients was developed.ResultsKey findings of the literature search were grouped under themes of adherence, decision-making, quality of life, patient/physician goals, communication, patient-reported outcomes, satisfaction and patient benefit index. Several aspects of treatment were identified as being relevant when choosing a biological agent for an individual patient.The questionnaire is devised in two parts. The first part asks questions about patients’ experience of psoriasis and satisfaction with previous treatments. The second part aims to identify the treatment attributes patients consider to be important and may as such affect their preference for a particular biological treatment. The questionnaire results will allow the physician to understand the key factors that can be influenced by biological drug choice that are of importance to the patient. This information can be used be the physician in clinical decision making.Conclusion
The questionnaire has been developed to provide a new tool to better understand and align patients’ and physicians’ preferences and goals for biological treatment of psoriasis.
Summary
Background: Translational research is the direct application of basic and applied research to patient care. It is estimated that there are at least 2,000 different skin diseases, thus there are considerable challenges in seeking to undertake research on each of these disorders.
Objective: This eDelphi exercise was conducted in order to generate a list of translational dermatology research questions which are regarded as a priority for further investigations.
Results: During the first phase of the eDelphi, 228 research questions were generated by an expert panel which included clinical academic dermatologists, clinical dermatologists, non-clinical scientists, dermatology trainees and representatives from patient support groups. Following completion of the second and third phases, 40 questions on inflammatory skin disease, 20 questions on structural skin disorders / genodermatoses, 37 questions on skin cancer and 8 miscellaneous questions were designated as priority translational dermatology research questions (PRQs). In addition to PRQs on a variety of disease areas (including multiple PRQs on psoriasis, eczema, squamous cell carcinoma (SCC) and melanoma), there were a number of cross-cutting themes which identified a need to investigate mechanisms / pathogenesis of disease and the necessity to improve treatments for patients with skin disease. Conclusion: It is predicted that this list of PRQs will help to provide a strategic direction for translational dermatology research in the UK and that addressing this list of questions will ultimately provide clinical benefit for substantial numbers of subjects with skin disorders.
Background
Inherited epidermolysis bullosa (EB) comprises a highly heterogeneous group of rare diseases characterized by fragility and blistering of skin and mucous membranes. Clinical features combined with immunofluorescence antigen mapping and/or electron microscopy examination of a skin biopsy allow to define the EB type and subtype. Molecular diagnosis is nowadays feasible in all EB subtypes and required for prenatal diagnosis. The extent of skin and mucosal lesions varies greatly depending on EB subtype and patient age. In the more severe EB subtypes lifelong generalized blistering, chronic ulcerations and scarring sequelae lead to multiorgan involvement, major morbidity and life-threatening complications. In the absence of a cure, patient management remains based on preventive measures, together with symptomatic treatment of cutaneous and extracutaneous manifestations and complications. The rarity and complexity of EB challenge its appropriate care. Thus, the aim of the present study has been to generate multicentre, multidisciplinary recommendations on global skin care addressed to physicians, nurses and other health professionals dealing with EB, both in centres of expertise and primary care setting.
Methods
Almost no controlled trials for EB treatment have been performed to date. For this reason, recommendations were prepared by a multidisciplinary team of experts from different European EB centres based on available literature and expert opinion. They have been subsequently revised by a panel of external experts, using an online-modified Delphi method to generate consensus.
Results
Recommendations are reported according to the age of the patients. The major topics treated comprise the multidisciplinary approach to EB patients, global skin care including wound care, management of itching and pain, and early diagnosis of squamous cell carcinoma. Aspects of therapeutic patient education, care of disease burden and continuity of care are also developed.
Conclusion
The recommendations are expected to be useful for daily global care of EB patients, in particular in the community setting. An optimal management of patients is also a prerequisite to allow them to benefit from the specific molecular and cell-based treatments currently under development.
A pediatric dermatology expert working group performed a narrative review to describe care related to congenital melanocytic nevi (CMN) in neonates and infants. There are no published guidelines for most aspects of care, including routine skin care and visit intervals. Few guidelines exist for surgical management; newer recommendations favor conservative practice. Emerging evidence contributes to recommendations for screening MRI to evaluate for neural melanosis and related central nervous system complications, however, more research is needed. Risk for melanoma is generally low, but those with large, giant, or multiple CMN have a higher risk. Multidisciplinary care, with a focus on family and patient preferences, is of paramount importance. Without standardized screening and management guidelines, questions abound regarding appropriate physical examination intervals, potential treatment including full or partial excision, timing and frequency of imaging, melanoma risk, and assessment for neural melanosis.
This review highlights the current state of knowledge concerning care of patients with CMN, reveals gaps in the literature surrounding skin care, and provides management recommendations. We additionally discuss cutaneous complications of CMN, such as pruritus, hypertrichosis, and wound healing. Resources and references for families and providers can help patients navigate this sometimes challenging diagnosis. Finally, we contribute expert care recommendations to the current body of literature as a foundation for the development of future, more comprehensive care guidelines.
Barriers to healthcare access are healthcare inequities that have been widely studied across different medical specialties. No studies have previously evaluated the state of barriers to healthcare access research in pediatric dermatology. A systematic review was conducted to examine the types of barriers identified within pediatric dermatology literature. Relevant information was extracted and categorized into the themes of systemic, sociocultural, or individual barriers. The systemic barriers we found include finances, wait times, and geography. The sociocultural barriers included culture beliefs and communication. Patient beliefs and health knowledge were found as individual barriers. The small number and limited scope of studies we identified suggest that barriers to healthcare access in pediatric dermatology remain an understudied topic. Additional research is needed to further characterize these barriers to dermatologic care, as well as the impact of any interventions designed to overcome them.
Background/Objectives
Cutaneous body image (CBI) is a self-reported measure of an individual's satisfaction with their hair, skin, and nails using a psychometric survey described and validated in adult dermatology patient populations. As the CBI’s clinical utility for pediatric dermatology patients has not yet been examined, we assessed the relationship between CBI scores, demographic, and clinical parameters among adolescents.
Methods
Retrospective cohort of 293 patients ages 13-18 seen at the UCSF pediatric dermatology clinic from June 2017 to February 2019. An 11-question CBI survey was administered as part of routine clinical care, querying patient satisfaction with their skin, hair, and nails on a 10-point Likert-type scale, and experience with embarrassment, bullying, and mental health care.
Results
Satisfaction with overall skin, skin of face, and hair significantly varied by patient age (P < .05), decreasing among subjects ages 13-16, and comparatively higher among patients ages 17-18. Mean total CBI scores did not significantly vary by sex, ethnicity, diagnosis, or new versus established patients. Mean total CBI scores were significantly higher among patients who did not report embarrassment (27.5) than among those who did (20.5) (P < .01), and among patients who had not experienced bullying (25.7) than among those who had (22.0) (P < .01).
Conclusions
Objective CBI scores among adolescents correlate with reported negative experiences of skin disease (embarrassment and bullying) and with age. The CBI provides insight into the psychosocial impact of skin disease among adolescents, validates the patient's subjective perspective of their disease, and informs patient-centered discussions and management in the pediatric dermatology clinic setting.
Importance:
A recent expert consensus exercise emphasized the importance of developing a global network of patient registries for alopecia areata to redress the paucity of comparable, real-world data regarding the effectiveness and safety of existing and emerging therapies for alopecia areata.
Objective:
To generate core domains and domain items for a global network of alopecia areata patient registries.
Evidence review:
Sixty-six participants, representing physicians, patient organizations, scientists, the pharmaceutical industry, and pharmacoeconomic experts, participated in a 3-round eDelphi process, culminating in a face-to-face meeting at the World Congress of Dermatology, Milan, Italy, June 14, 2019.
Findings:
Ninety-two core data items, across 25 domains, achieved consensus agreement. Twenty further noncore items were retained to facilitate data harmonization in centers that wish to record them. Broad representation across multiple stakeholder groups was sought; however, the opinion of physicians was overrepresented.
Conclusions and relevance:
This study identifies the domains and domain items required to develop a global network of alopecia areata registries. These domains will facilitate a standardized approach that will enable the recording of a comprehensive, comparable data set required to oversee the introduction of new therapies and harness real-world evidence from existing therapies at a time when the alopecia areata treatment paradigm is being radically and positively disrupted. Reuse of similar, existing frameworks in atopic dermatitis, produced by the Treatment of Atopic Eczema (TREAT) Registry Taskforce, increases the potential to reuse existing resources, creates opportunities for comparison of data across dermatology subspecialty disease areas, and supports the concept of data harmonization.
Background and objectives:
Timely access to pediatric dermatology care remains a challenge. While awaiting appointments, many patients and families utilize so-called health care touchpoints outside of the dermatology clinic such as primary care or emergency department visits to address dermatologic concerns. Long waiting periods also factor into nonattendance rates at pediatric dermatology appointments. This observational retrospective study investigated wait times, relevant health care touchpoints, and factors related to nonattendance at a pediatric dermatology clinic.
Methods:
We reviewed demographic, health care touchpoint, and nonattendance data for patients referred by a primary care affiliate to the Children's Hospital of Philadelphia (CHOP) pediatric dermatology clinic from February 2016 to May 2017. Descriptive statistics were used to identify trends among analyzed variables.
Results:
We reviewed 250 patient records. The average number of touchpoints per patient was 0.56, and factors that significantly correlated with increased numbers of touchpoints included younger patient age and longer wait time while payer, primary diagnosis, and time of year were not associated. The nonattendance rate was 26%, and factors significantly associated with increased nonattendance rate included longer wait times and winter and spring appointments.
Conclusion:
Long wait times impact numbers of touchpoints and appointment attendance rate when referring to pediatric dermatology. A platform such as teledermatology may represent an opportunity to improve access to care by allowing for earlier input from the pediatric dermatologist.
Background:
Awareness of PHACE syndrome has increased; however, little information exists regarding its natural history, especially in patients over the age of 18. We aim to describe the natural history of PHACE to enhance clinical management and counseling of patients.
Methods:
A cohort of patients ≥ 18 years was identified through the PHACE Syndrome Registry and a Vascular Anomalies Clinic Database. A cross-sectional survey was designed after a review of the literature by PHACE experts (IF, JP, DS). Questions were selected by consensus, and the survey was conducted using the Qualtrics platform and via in-person interviews. A 75% response rate was found.
Results:
Eighteen adults-17 females and one transgender male-completed the survey. Respondents ranged in age from 18 to 59, with 24 being the mean age. Eighty-nine percent reported experiencing headaches, and 17% reported experiencing acute but transient symptoms mimicking acute ischemic stroke, later diagnosed as atypical migraines. Thirty-three percent reported hearing loss, and 67% endorsed dental issues. One patient experienced two arterial dissections. Three-fourths who attempted conception were successful, and none of their children had clinical features of PHACE. Because results were based on a retrospective survey, data captured were prone to recall bias and not objective. Results were limited by a small sample size.
Conclusions:
Health care providers should be aware of a possible increased risk of neurovascular complications, including atypical migraines mimicking transient ischemic attacks and arterial dissection, in adults with PHACE. Heritability has not been demonstrated, and future studies are needed to assess the risk of infertility.
Aim:
To develop and validate a dermatology-specific quality of life (QoL) instrument for adolescents with skin diseases.
Methods:
Qualitative semi-structured interviews were conducted with adolescents with skin disease to gain in-depth understanding of how skin diseases affect their QoL. A prototype instrument based on the themes identified from content analysis of interviews was tested in several stages, using Classical Test Theory (CTT) and Item Response Theory (IRT) models to develop this new tool and conduct its psychometric evaluation.
Results:
Thirty-three QoL issues were identified from semi-structured interviews with 50 adolescents. A questionnaire based on items derived from content analysis of interviews was subjected to Rasch analysis: factor analysis identified three domains, therefore not supporting the validity of T-QoL as a unidimensional measure. Psychometric evaluation of the final 18-item questionnaire was carried out in a cohort of 203 adolescents. Convergent validity was demonstrated by significant correlation with Skindex-Teen and CDLQI or DLQI. The T-QoL showed excellent internal consistency reliability: Cronbach's α=0.89 for total scale score and 0.85, 0.60, and 0.74 respectively for domains 1, 2 and 3. Test-retest reliability was high in stable subjects. T-QoL showed sensitivity to change in two sub-groups of patients who indicated change in their self-assessed disease severity.
Conclusion:
Built on rich qualitative data from patients, the T-QoL is a simple and valid tool to quantify the impact of skin disease on adolescents' QoL; it could be used as an outcome measure in both clinical practice and clinical research. This article is protected by copyright. All rights reserved.
Background/objectives:
The psychological effect of alopecia areata (AA) is well documented, but group interaction may help lessen this burden. We aimed to determine factors that draw patients with AA and their families to group events.
Methods:
Surveys were administered at the annual alopecia areata bowling social in 2015 and 2016. This event is a unique opportunity for children with AA and their families to meet others with the disease and connect with local support group resources from the Minnesota branch of the National Alopecia Areata Foundation. Data from 2015 and 2016 were combined. Comparisons of subgroups were performed using Fisher exact tests for response frequencies and percentages and two-sample t tests for mean values.
Results:
An equal number of men and women participated in the study (n = 13 each). The average age was 41.1 years. There were no significant differences (p > 0.05) in survey responses based on respondent age or sex. Twenty-three (88.5%) attendees sought to connect with others with AA and met three or more people during the event. Seventeen (65.4%) also attended other support group events. Twelve respondents (46.2%) came to support a friend or family member. One hundred percent of attendees identified socializing with others with AA as important.
Conclusions:
Group interaction is an important source of therapeutic support for people with AA and their families.
Atopic dermatitis (AD) and psoriasis are common chronic inflammatory diseases that are associated with significant psychosocial morbidity and a decrease in health-related quality of life (QOL). To better understand the effects of these two diseases on quality of life, as reported in the literature, a review of all English-language articles from 1970 to 2003 was performed using PubMed. Results from these studies and surveys illustrate the profound negative impact exerted by these conditions and the importance of early and appropriate treatment. These concerns can be incorporated into patient management strategies that focus on a new model for healthcare delivery, "patient-centered care," in which QOL plays an integral role. The impact of AD and psoriasis on physical, social, psychological, and financial aspects of life should not be trivialized and must be considered with the same importance as other chronic conditions. Because psoriasis and AD are chronic conditions that require patient and/or caregiver involvement for optimal management, the concept of patient-centered care with its emphasis on effective two-way communication is particularly important and useful for the clinician.
Recent discussions regarding the burden of skin disease and patient-centered medicine highlight the profound effects skin disease can have on individuals, their families, and society as a whole. Local support groups, often connected to national patient advocacy groups, can be an invaluable resource for patients, and offer physicians the opportunity to learn more about patients' disease experiences while providing adjunctive therapy for conditions such as alopecia areata and vitiligo, for which medical options are often limited. We created a support group for children with alopecia areata and their parents as a model for other diseases such as vitiligo and epidermolysis bullosa. Herein we outline the steps involved in establishing a support group, including the many resources available for patient support, steps in the recruitment of patients, topics for discussion and goals for the group, and the logistics of running a meeting. Creating this family support group was a relatively straightforward and rewarding experience for us, and we hope that other pediatric dermatologists can utilize this model for their patients.
Acne has significant negative effects on an individual's psychosocial functions. There is not always a correlation between the severity of acne and its impact on quality of life. Our objective was to evaluate the correlation between quality of life scales and both the physician's and patient's assessments of acne severity and to find out which quality of life scale is more sensitive to changes in acne severity by using generic and acne specific scales. One hundred and twenty acne patients were enrolled. The physician's assessment of acne severity was made by means of Global Acne Grading System. Patients evaluated their acne severity on a 10-point Likert-type scale. Quality of life was measured by the Turkish version of Acne Quality of Life (AQOL) scale and Short Form-36 (SF-36). One hundred and seven patients answered the questions of the AQOL scale completely and were included in the statistical analysis. The AQOL scale did not correlate with the physician's assessment of acne severity whereas there was a correlation between patients' self assessments and AQOL scale. No correlation was found between SF-36 and either the physician's or patients' own assessments. Assessment of acne should not be limited to objective acne severity measures but also include patients' self assessments and acne specific quality of life scales. These measures, which provide a better understanding of patients' perception of severity, are important tools when taking treatment decisions.
Involving the patient: impact of inflammatory skin disease and patient‐focused care
- S Feldman
- SM Behnam
- SE Behnam
- JYM Koo