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1.
Plast Reconstr Surg Glob Open ; 12(4): e5771, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38689944

ABSTRACT

Background: Facial skin cancer and its surgical treatment can affect health-related quality of life. The FACE-Q Skin Cancer Module is a patient-reported outcome measure that measures different aspects of health-related quality of life and has recently been translated into Dutch. This study aimed to evaluate the performance of the translated version in a Dutch cohort using modern psychometric measurement theory (Rasch). Methods: Dutch participants with facial skin cancer were prospectively recruited and asked to complete the translated FACE-Q Skin Cancer Module. The following assumptions of the Rasch model were tested: unidimensionality, local independence, and monotonicity. Response thresholds, fit statistics, internal consistency, floor and ceiling effects, and targeting were assessed for all scales and items within the scales. Responsiveness was tested for the "cancer worry" scale. Results: In total, 259 patients completed the preoperative questionnaire and were included in the analysis. All five scales assessed showed a good or sufficient fit to the Rasch model. Unidimensionality and monotonicity were present for all scales. Some items showed a local dependency. Most of the scales demonstrate ordered item thresholds and appropriate fit statistics. Conclusions: The FACE-Q Skin Cancer Module is a well-designed patient-reported outcome measure that shows psychometric validity for the translated version in a Dutch cohort, using classical and modern test theory.

3.
Dermatol Surg ; 50(3): 247-255, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38048208

ABSTRACT

BACKGROUND: Nasal reconstruction after conventional surgical excision (CSE) of nonmelanoma skin cancer (NMSC) can be challenging. After excision and before the pathologic report, a simple reconstruction is favored. Yet, little is known about patient satisfaction after primary closure and second intention healing. OBJECTIVE: Patient satisfaction after nasal defect reconstruction with primary closure or second intention healing, using the FACE-Q Skin Cancer. METHODS: All patients who underwent CSE of nasal NMSC with immediate primary closure or second intention healing between March 2018 and March 2020 at Máxima Medisch Centrum Veldhoven were identified and asked to complete the FACE-Q Skin Cancer. RESULTS: Of 183 patients, 140 patients completed the questionnaire. Fifty-five defects were closed by primary closure (38.5%) and 88 by second intention healing (61.5%). Thirty-one complications were reported (16.7%), of which 87.1% ( n = 27) after second intention healing ( p = .004). Both groups experienced high facial and scar satisfaction, low appearance-related distress, and no to minimal adverse effects. Second intention healing had 2.7 higher odds of achieving the maximum scar satisfaction score ( p = .02). CONCLUSION: This study shows high satisfaction on facial and scar appraisal, low appearance-related distress, and no to minimal adverse effects for second intention healing and primary closure after CSE of nasal NMSC.


Subject(s)
Drug-Related Side Effects and Adverse Reactions , Facial Neoplasms , Nose Neoplasms , Skin Neoplasms , Humans , Patient Satisfaction , Cicatrix/etiology , Cross-Sectional Studies , Intention , Skin Neoplasms/surgery , Nose Neoplasms/surgery , Facial Neoplasms/surgery , Cohort Studies
4.
Dermatol Surg ; 50(4): 331-336, 2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38147436

ABSTRACT

BACKGROUND: There is a paucity of literature describing family planning challenges faced by Mohs fellows. OBJECTIVE: To characterize perceptions about and experiences with family planning, fertility, lactation, and parental leave and identify ways to support parental health and family planning for Mohs fellows. MATERIALS AND METHODS: A voluntary, anonymous survey was distributed to Mohs surgeons who recently completed fellowship. RESULTS: In total, 116 Mohs surgeons completed the survey. Their mean age was 34.5 years old, and more were female ( n = 81, 69.8%) than male ( n = 35, 30.2%). Most had children before completion of their Mohs training ( n = 73, 62.9%). The most significant barrier to having children during fellowship was "loss of education or training time." Over 20% ( n = 23) of respondents or their partner had experienced infertility. Half of the 20 respondents ( n = 10) who breastfed or pumped did not have a convenient place to do so. CONCLUSION: This study elucidates trainee perceptions and gaps in parental support for Mohs fellowship trainees. In addition, barriers to implementing a universal family planning policy in Mohs surgery are discussed.


Subject(s)
Family Planning Services , Internship and Residency , Child , Humans , Male , Female , Adult , Fellowships and Scholarships , Education, Medical, Graduate , Parents , Surveys and Questionnaires
5.
Int J Radiat Oncol Biol Phys ; 117(5): 1090-1095, 2023 Dec 01.
Article in English | MEDLINE | ID: mdl-37791935

ABSTRACT

PURPOSE: Little is known about patient-reported quality of life (QOL) before and after radiotherapy (RT) for early keratinocyte carcinoma (KC). The present study tested the hypothesis that QOL is hypothesized to deteriorate soon after RT, with subsequent improvement of a magnitude similar to other KC treatments. METHODS AND MATERIALS: This observational study assessed prospectively collected longitudinal patient-reported QOL data at a single center. Patients undergoing external beam RT for early-stage (T0-2, <4 cm) KC that completed the Skindex-16 (S16) or Skin Cancer Index (SCI) before and at least once after RT were included. These indices include subscales of symptoms, emotions, and functioning for S16 and emotional, social, and appearance for SCI. RESULTS: 81 patients (median age 79 years) were treated for early KC, most being basal cell carcinomas (87%) on the face (80%) an average of 1.3 cm in diameter. Composite S16 scores and total SCI scores showed significant, clinically meaningful improvements at 3 months and 6 weeks after RT, respectively. QOL declined at 6 weeks after treatment on the S16 symptoms subscale. Concurrently, S16 and SCI emotional subscales significantly improved, and this trend persisted for 2+ years. Improvements in S16 functioning and SCI social and appearance QOL occurred after RT. The magnitude of improvement in QOL 3-12 months after RT was comparable to what has been previously reported after other types of KC treatments, like surgery. CONCLUSIONS: QOL related to symptoms deteriorates during the first 6 weeks after RT for early KC, but it improves by 3 months. QOL related to emotions, functioning, social, and appearance all improve after RT. These changes in QOL are similar to those observed after other treatments of early KC.


Subject(s)
Carcinoma , Skin Neoplasms , Humans , Aged , Quality of Life , Skin Neoplasms/radiotherapy , Keratinocytes
7.
Dermatol Surg ; 49(8): 747-754, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37235869

ABSTRACT

BACKGROUND: Cutaneous squamous cell carcinoma (cSCC) of the ear is associated with poor outcomes. No studies have evaluated current staging system performance in this specific location. OBJECTIVE: Describe clinicopathologic characteristics and outcomes of ear cSCC and evaluate the performance of current staging systems. METHODS: Retrospective study including cases diagnosed and treated at a cancer center from January 2000 to December 2014. Demographic, clinical, and pathologic data were collected from clinical records. Biopsy slides were rereviewed and patients were staged according to the American Joint Committee on Cancer (AJCC) seventh, eighth, and Brigham Women's Hospital (BWH) staging. RESULTS: Of 125 patients, the mean age at diagnosis was 71.9 years (SD 12.5), with most men (89.6%, n = 112). Median follow-up was 22.3 months. Local recurrence and survival risk factors were similar to cSCC outside the ear. The Akaike's Information Criterion (AIC) estimates showed that the BWH system better predicted outcomes than the AJCC seventh, and the AJCC eighth, with AIC values of 189.9, 270.5, and 274.1, respectively. Limitations of the study include retrospective design, single center study, and no control group. CONCLUSION: Current staging systems perform well at stratifying risk in ear cSCC.


Subject(s)
Carcinoma, Squamous Cell , Ear Neoplasms , Skin Neoplasms , Male , Humans , Female , Aged , Carcinoma, Squamous Cell/pathology , Retrospective Studies , Skin Neoplasms/pathology , Neoplasm Staging , Risk Factors , Ear Neoplasms/pathology , Prognosis
8.
Psychooncology ; 32(7): 1114-1121, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37209026

ABSTRACT

OBJECTIVE: Patients undergoing Mohs Micrographic Surgery (MMS) for facial non-melanoma skin cancer (NMSC) experience appearance-related psychosocial distress due to its post-surgical esthetic changes. However, little is known about its development over a longer follow-up period. This study prospectively assessed appearance-related psychosocial distress in patients undergoing MMS for facial NMSC over a 1-year follow up period. METHODS: Patients who had MMS for facial NMSC between September 2020 and October 2021 were invited to answer the FACE-Q Skin Cancer - appearance-related psychosocial distress scale preoperatively, 2 weeks, 6 months, and 1 year after surgery. RESULTS: A total of 217 patients completed the questionnaire at baseline. In addition, 158 (72.8%), 139 (64.1%), and 120 (55.3%) questionnaires were successfully answered 2 weeks, 6 months, and 1 year after surgery, respectively. Patients with a peripheral lesion presented higher appearance-related psychosocial distress scores at baseline than patients with a central lesion (p = 0.02). There was a decreasing trend in appearance-related psychosocial distress over time, but without a significant result (baseline-2-week; p = 0.73, 2-week-6-month; p = 0.80, 6-month-1-year; p = 0.17, baseline-1-year; p = 0.23). Patients with secondary intention healing and graft reconstruction methods experienced more appearance-related psychosocial distress over time than patients with primary wound closures (p = 0.03). CONCLUSIONS: Patients still experience appearance-related psychosocial distress 1 year after MMS. These patients may benefit from targeted counseling. Additionally, predictors of more appearance-related psychosocial distress, such as secondary intention healing and graft reconstruction methods, may benefit from additional psychological care.


Subject(s)
Skin Neoplasms , Humans , Prospective Studies , Skin Neoplasms/surgery , Skin Neoplasms/psychology , Mohs Surgery/psychology , Face/pathology , Face/surgery , Surveys and Questionnaires
9.
BMJ Open ; 13(3): e067141, 2023 03 31.
Article in English | MEDLINE | ID: mdl-37001917

ABSTRACT

INTRODUCTION: There are unmet mental health needs of depressed adolescents and young adults (AYAs) across the USA. Behavioural technology adequately integrated into clinical care delivery has potential to improve care access and efficiency. This multisite randomised controlled trial evaluates how a coach-enhanced digital cognitive behavioural intervention (dCBI) enhances usual care for depressed AYAs in paediatric practices with minority enriched samples. METHODS AND ANALYSIS: Participants (n=750) ages 16-22 who meet threshold criteria for depressive severity (Patient Health Questionnaire-9; PHQ-9 score 10-24) will be recruited through paediatric practices across three academic institutions (Boston, Pittsburgh and San Diego). Participants will be randomised to 12 weeks of dCBI+treatment as usual (TAU) (n=450) or TAU alone (n=300) in outpatient paediatric practices. Assessments will be completed at baseline, 6 weeks and 12 weeks with the primary outcome being improvement in clinician-rated and self-reported depressive severity (Children's Depression Rating Scale-Revised and PHQ-9) and secondary outcomes being self-reported suicidal ideation (item 9 on PHQ-9), anxiety severity (Generalised Anxiety Disorder), general quality of life (Satisfaction with Life Scale) and general functioning (Children's Global Assessment Scale). The study design is an intent-to-treat mixed effects regression with group, and covariates nested within the sites. ETHICS AND DISSEMINATION: All participants or their parent/guardian (under 18 years or unemancipated) will give informed consent to a study team member. All data are expected to be collected over 18 months. The Institutional Review Board (IRB) is a board at each institution in the United States that reviews and monitors research involving human subjects. IRB approval from the University of Pittsburgh was obtained on 30 November 2021 (STUDY21080150), from the University of California San Diego's Human Research Protection Program IRB on 14 July 2022 (802047), and from the Boston Children's Hospital IRB on 25 October 2022 (P00040987). Full study results are planned to be published within 2 years of initial study recruitment (October 2024). Dissemination of findings will occur in peer-reviewed journals, professional conferences and through reports to participating entities and stakeholders. TRIAL REGISTRATION NUMBER: NCT05159713; ClinicalTrials.gov.


Subject(s)
Depression , Mental Health , Humans , Young Adult , Adolescent , Child , Adult , Depression/therapy , Quality of Life , Anxiety/therapy , Anxiety Disorders , Treatment Outcome , Randomized Controlled Trials as Topic
10.
Arch Dermatol Res ; 315(4): 917-923, 2023 May.
Article in English | MEDLINE | ID: mdl-36400864

ABSTRACT

Mohs histotechs are at high risk for work-related musculoskeletal disorders (WRMSDs) due to repetitive motions, forceful exertions, and fixed postures required for their work. Psychosocial factors such as perceptions of pressure to achieve deadlines may exacerbate risk of occupational injury. To assess the prevalence of and risk factors for WRMSD in Mohs histotechs, an online survey was created using literature review, expert opinion, and two validated instruments (the Nordic Musculoskeletal Questionnaire and the Oldenburg Burnout Inventory) and distributed to Mohs histotechs. 88% of respondents reported musculoskeletal problems in 2 or more of the 9 body sites assessed in the past year. Standing during specimen processing was correlated with having neck pain and upper back pain, while sitting was protective against lower back pain. Individuals that felt that they could not take breaks or slow their pace of work were more likely to report pain at multiple body sites. Total pain scores were significantly lower in those reporting extensive ergonomic training. There is a high prevalence of WRMSD in Mohs histotechs. Addressing poor posture as well as psychosocial risk factors could further reduce injury.


Subject(s)
Musculoskeletal Diseases , Occupational Diseases , Humans , Occupational Diseases/epidemiology , Occupational Diseases/etiology , Musculoskeletal Diseases/etiology , Musculoskeletal Diseases/complications , Ergonomics , Risk Factors , Surveys and Questionnaires , Prevalence , Pain
11.
Int J Radiat Oncol Biol Phys ; 116(3): 544-550, 2023 07 01.
Article in English | MEDLINE | ID: mdl-36586493

ABSTRACT

PURPOSE: Keratinocyte carcinomas are amenable to many treatments, including radiation therapy (RT). Electronic skin surface brachytherapy (ESSB) enables the precise delivery of radiation without radioisotopes. In this prospective multicenter clinical trial, we characterized early outcomes of ESSB prospectively through both patient- and clinician-reported measures. To corroborate the cosmesis observations, we also assessed patient-reported quality of life (QoL) and adverse events. METHODS AND MATERIALS: Patients ≥60 years old with stage T1N0M0 keratinocyte carcinoma were treated with ESSB. At 2-, 6-, and 12-weeks post-treatment, cosmesis from ESSB was assessed by both the patient and a clinician study investigator as either "good," "fair," or "bad." The Skindex-16 and the Skin Cancer Index (SCI) were used to assess patient QoL before and after treatment. Adverse events were assessed using the Common Toxicity Criteria for Adverse Events, version 4.0. RESULTS: Cosmesis and QoL were collected at 97% (99/102) of possible patient follow-up times. By 12 weeks post-treatment, 93.9% (31/33) of patient-reported and 96.9% (31/32) of clinician-reported cosmesis outcomes were "good." Compared with baseline, total Skindex-16 score significantly deteriorated at 2 weeks post-treatment (10.5 vs 24.5, P <.001), but significantly improved at 6 weeks (10.5 vs 4.7, P = .014) and 12 weeks (10.5 vs 2.1, P = .001) post-treatment. The total SCI score significantly improved from baseline to 6 weeks (78.4 vs 89.0, P = .001) post-treatment. The most frequent adverse events were radiation dermatitis, skin pain, and pruritus. All adverse events resolved to Grade ≤1 by 12 weeks post-treatment. CONCLUSIONS: This prospective, multicenter study demonstrated that ESSB is associated with a high rate of "good" early patient-reported cosmesis and increasing QoL and satisfaction with time. Validated assessments demonstrated a significant improvement in quality of life and resolution of moderate early adverse events by 6 to 12 weeks after treatment and corroborate the observation of favorable cosmesis.


Subject(s)
Brachytherapy , Breast Neoplasms , Carcinoma , Skin Neoplasms , Humans , Middle Aged , Female , Quality of Life , Prospective Studies , Brachytherapy/adverse effects , Brachytherapy/methods , Skin Neoplasms/radiotherapy , Breast Neoplasms/etiology
12.
Arch Dermatol Res ; 315(6): 1473-1480, 2023 Aug.
Article in English | MEDLINE | ID: mdl-36469125

ABSTRACT

Many patient-reported outcome measures (PROMs) have been used to study quality of life (QOL) in the skin cancer population. Advanced melanoma and non-melanoma skin cancer (NMSC) may be associated with increased morbidity, mortality, and treatment side effects; however, it is unclear which PROM is valid and appropriate to use in these populations for both clinical and research purposes. We aimed to identify the PROMs that have been used to measure QOL in advanced skin cancer patients and determine which of these PROMs have been validated to assess QOL outcomes in this population. A PubMed and EMBASE search was conducted from its inception to March 2021 according to PRISMA guidelines with a comprehensive list of search terms under three main topics: (1) PROM; (2) advanced skin cancer; and (3) staging and interventions. We included articles utilizing a PROM measuring QOL and having a patient population with advanced skin cancer defined as melanoma stage > T1a or non-melanoma AJCC stage T3 or greater. Advanced skin cancer patients were also defined as those with metastasis or requiring adjuvant therapy (systemic chemotherapy, radiation, and immunotherapy). Studies were excluded according to the following criteria: mix of low-risk and advanced skin cancer patients in the study population without stratification into low-risk and advanced groups, stage T1a melanoma or mix of stages without stratification, low-risk NMSC, no PROM (i.e., study specific questionnaires), non-English publication, review article or protocol paper, conference abstract, or populations including non-skin cancers. A total of 1,998 articles were identified. 82 met our inclusion criteria resulting in 22 PROMs: five generic health-related (QWB-SA, AQoL-8D, EQ-5D, SF-36, and PRISM), six general cancer (EORTC QLQ-C30, EORTC QLQ-C36, LASA, IOC, Rotterdam Symptom Checklist, and FACT-G), nine disease-focused or specialized (EORTC QLQ-H&N35, EORTC QLQ-MEL38, EORTC QLQ-BR23, Facial Disability Index, FACT-H&N, FACT-BRM, FACT-B, FACT-M, and scqolit), and two general dermatology (Skindex-16 and DLQI) PROMs. All PROMs have been generally validated except for EORTC QLQ-MEL38. Only two PROMs have been validated in the advanced melanoma population: FACT-M and EORTC QLQ-C36. No PROMS have been validated in the advanced NMSC population. The PROMs that were validated in the advanced melanoma population do not include QOL issues unique to advanced skin tumors such as odor, bleeding, itching, wound care burden, and public embarrassment. Breast cancer and head and neck cancer instruments were adapted but not validated for use in the advanced skin cancer population due to the lack of an adequate instrument for this population. This study highlights the need for PROM instrument validation or creation specifically geared toward the advanced skin cancer population. Future studies should aim to develop and validate a PROM to assess QOL in this population.


Subject(s)
Melanoma , Skin Neoplasms , Humans , Quality of Life , Skin Neoplasms/therapy , Melanoma/therapy , Surveys and Questionnaires , Patient Reported Outcome Measures
13.
Clin Pediatr (Phila) ; 62(6): 597-604, 2023 06.
Article in English | MEDLINE | ID: mdl-36461155

ABSTRACT

Children with chronic medical conditions, including heart disease, have increased susceptibility to behavioral health concerns. We sought to evaluate the feasibility and parental opinion of anxiety screening in pediatric cardiology clinic. The PROMIS Pediatric Anxiety v2.0 Short Form 8a (PA2-S8) questionnaire was administered to 48 patients presenting to pediatric cardiology clinic for follow-up care. Parents/caregivers were asked their opinion on anxiety screening in cardiology clinic. The survey was completed by 47 out of 48 participants (median age 13, range 9-17). Fourteen (30%) participants had scores suggestive of increased anxiety symptomatology. No trends were identified between PA2-S8 score and age at diagnosis (P = .13), age at survey administration (P = .28), number of lifetime procedures (P = .89), number of noncardiac specialists (P = .13), or underlying cardiac diagnoses (P = .55). Most families (76%) were in favor of the screening effort. This study suggests that anxiety screening in cardiology clinic is both feasible and well-received by families.


Subject(s)
Cardiology , Caregivers , Child , Humans , Adolescent , Pilot Projects , Feasibility Studies , Anxiety/diagnosis
14.
J Am Acad Dermatol ; 88(2): 371-379, 2023 02.
Article in English | MEDLINE | ID: mdl-31812621

ABSTRACT

BACKGROUND: Lentigo maligna/lentigo maligna melanoma (LM/LMM) can present with subclinical extension that may be difficult to define preoperatively and lead to incomplete excision and potential recurrence. Preliminarily studies have used reflectance confocal microscopy (RCM) to assess LM/LMM margins. OBJECTIVE: To evaluate the correlation of LM/LMM subclinical extension defined by RCM compared with the gold standard histopathology. METHODS: Prospective study of LM/LMM patients referred for dermatologic surgery. RCM was performed at the clinically defined initial surgical margin followed by margin-controlled staged excision with paraffin-embedded tissue, and histopathology was correlated with RCM results. RESULTS: Seventy-two patients were included. Mean age was 66.8 years (standard deviation, 11.1; range, 38-89); 69.4% were men. Seventy of 72 lesions (97.2%) were located on the head and neck with mean largest clinical diameter of 1.3 cm (range, 0.3-5). Diagnostic accuracy for detection of residual melanoma in the tumor debulk (after biopsy) had a sensitivity of 96.7% and a specificity of 66.7% when compared with histopathology. RCM margin assessment revealed an overall agreement with final histopathology of 85.9% (κ = 0.71; P < .001). LIMITATIONS: No RCM imaging beyond initial planned margins was performed. CONCLUSION: RCM showed moderate to excellent overall agreement between RCM imaging of LM/LMM and histopathology of staged excision margins.


Subject(s)
Hutchinson's Melanotic Freckle , Melanoma , Skin Neoplasms , Male , Humans , Aged , Female , Hutchinson's Melanotic Freckle/diagnostic imaging , Hutchinson's Melanotic Freckle/surgery , Hutchinson's Melanotic Freckle/pathology , Prospective Studies , Skin Neoplasms/diagnostic imaging , Skin Neoplasms/surgery , Skin Neoplasms/pathology , Melanoma/diagnostic imaging , Melanoma/surgery , Melanoma/pathology , Margins of Excision , Microscopy, Confocal/methods
17.
Dermatol Surg ; 48(11): 1155-1158, 2022 11 01.
Article in English | MEDLINE | ID: mdl-36342247

ABSTRACT

BACKGROUND: There are multiple modalities for patient education ranging from written to audiovisual formats. However, little is known regarding which modality is optimal. OBJECTIVE: To assess patient preference for educational materials about scar care following surgery for facial skin cancer using the FACE-Q Skin Cancer patient reported outcome measure. MATERIALS AND METHODS: On the day of Mohs surgery, patients were given a written handout or viewed a 3-minute animation video regarding best practices in scar improvement. Afterward, patients received the FACE-Q Skin Cancer-Satisfaction with Information: Appearance scale. Three months later, patients were called and given the same scale and additional questions regarding scar care. RESULTS: A total of 75 patients were enrolled. There was no difference between the 2 groups' preoperative information scores (p = .85) and the three-month postoperative scores (p = .37). The change in preoperative and postoperative score showed no significant difference between the 2 groups (p = .21); but there was a trend of higher satisfaction in the video group on the day of Mohs surgery. After the 3-month timepoint, there was a higher satisfaction trend observed with the written handout group. CONCLUSION: Patient preferences in information delivery and accessibility will contribute to greater information retention and satisfaction.


Subject(s)
Facial Neoplasms , Skin Neoplasms , Humans , Mohs Surgery/adverse effects , Cicatrix/etiology , Cicatrix/prevention & control , Cicatrix/surgery , Patient Preference , Patient Satisfaction , Patient Education as Topic , Skin Neoplasms/surgery , Facial Neoplasms/surgery
19.
J Skin Cancer ; 2022: 4046554, 2022.
Article in English | MEDLINE | ID: mdl-35959144

ABSTRACT

Public access to genetic information is increasing, and community dermatologists may progressively encounter patients interested in genetic testing for melanoma risk. Clarifying potential utility will help plan for this inevitability. We determined interest and uptake of genetic risk feedback based on melanocortin receptor gene (MC1R) variants, immediate (two weeks) responses to risk feedback, and test utility at three months in patients (age ≥ 18, with a history of nonmelanoma skin cancer). Participants (N = 50) completed a baseline survey and were invited to consider MC1R testing via the study website. Testing interest and uptake were assessed through registration of test decision, request of a saliva test kit, and kit return (all yes/no). Immediate responses to risk feedback included feedback-relevant thoughts, emotions, communication, and information seeking after result receipt; test utility outcomes included family and physician communication and information seeking. Results indicated good retention at both time points (76%; 74%). Half (48%) logged onto the study website, and of these, most (92%) chose testing and (95%) returned a saliva sample. After two weeks, most (94%) had read all the risk feedback information and distress was low (M = 8.81, 7-28, SD = 2.23). Many (69%) had talked with their family about the results. By three months, most had spoken with family (92%) and physicians (80%) about skin cancer risk. Physician communication was higher (70%) in those tested versus those not tested (40%, p = 0.02). The substantial interest and promising outcomes associated with MC1R genetic testing in dermatology patients inform intervention strategies to enhance benefits and minimize risks of skin cancer genetic testing.

20.
J Am Acad Dermatol ; 87(3): 573-581, 2022 09.
Article in English | MEDLINE | ID: mdl-35551965

ABSTRACT

BACKGROUND: There is variation in the outcomes reported in clinical studies of basal cell carcinoma. This can prevent effective meta-analyses from answering important clinical questions. OBJECTIVE: To identify a recommended minimum set of core outcomes for basal cell carcinoma clinical trials. METHODS: Patient and professional Delphi process to cull a long list, culminating in a consensus meeting. To be provisionally accepted, outcomes needed to be deemed important (score, 7-9, with 9 being the maximum) by 70% of each stakeholder group. RESULTS: Two hundred thirty-five candidate outcomes identified via a systematic literature review and survey of key stakeholders were reduced to 74 that were rated by 100 health care professionals and patients in 2 Delphi rounds. Twenty-seven outcomes were provisionally accepted. The final core set of 5 agreed-upon outcomes after the consensus meeting included complete response; persistent or serious adverse events; recurrence-free survival; quality of life; and patient satisfaction, including cosmetic outcome. LIMITATIONS: English-speaking patients and professionals rated outcomes extracted from English language studies. CONCLUSION: A core outcome set for basal cell carcinoma has been developed. The use of relevant measures may improve the utility of clinical research and the quality of therapeutic guidance available to clinicians.


Subject(s)
Carcinoma, Basal Cell , Skin Neoplasms , Carcinoma, Basal Cell/therapy , Delphi Technique , Humans , Quality of Life , Research Design , Skin Neoplasms/therapy , Treatment Outcome
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