Microsoft Word - 6. 647 Proof done.docx SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 34 RESIDENT COMPETITION RESEARCH ARTICLES The Perception of Chemotherapy-Induced Alopecia in Cancer Patients Currently Undergoing Treatment Margit Juhász, MD,1* Jamie Fortman, MSc,2* Jessica Lin, MD,2 Yessica Landaverde,1 Joshua Levy, MD,2 Christine Pham, BS,1,2 Nicole Myers, MPH,2 Chloe Ekelem, MD,1 Ritesh Parajuli, MD,3 Lari Wenzel, PhD,2,4 Natasha Atanaskova Mesinkovska, MD, PhD1 1 University of California-Irvine, Department of Dermatology, Irvine, CA, USA 2 University of California-Irvine, School of Medicine, Irvine CA, USA 3 University of California-Irvine, Division of Hematology/Oncology, Department of Medicine, Irvine, CA, USA 4 University of California-Irvine, Department of Medicine, Biobehavioral Shared Resource of Chao Family Comprehensive Cancer Center, Irvine CA, USA *These authors contributed equally to this work. Background: Chemotherapy-induced alopecia (CIA) is a common adverse effect of chemotherapy. Eight percent of patients consider declining chemotherapy due to CIA risk. Objective: To determine whether cancer patients who are actively receiving chemotherapy are interested in preventing or treating CIA. Materials and Methods: This is a survey-based, cross-sectional study of cancer patients undergoing chemotherapy infusion at a tertiary medical center. Data including demographics, cancer diagnosis, medical literacy, quality of life, hair quality satisfaction, and costs patients were willing to accrue for CIA prevention/treatment were gathered. Results: Sixty-two adults were enrolled, mostly 55 to 64 years of age, female (72.6%), and Caucasian (63.8%). Many patients were diagnosed with malignancies associated with a high rate of morbidity-mortality including ovarian, lung and pancreatic. In our cohort, all patients would not decline cancer treatment based on CIA risk. 94.6% of patients were unwilling to risk cancer recurrence, 80.9% additional side effects, 55.8% extra time outside of infusion and 47.9% to pay out-of-pocket for CIA prevention/treatment. Conclusions: Patients with high cancer disease burden will not decline current treatment due to CIA risk. In addition, they are not willing to sustain additional discomfort, cost or time to prevent or treat CIA. ABSTRACT SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 35 Chemotherapy-induced alopecia (CIA) is among the five most common adverse events related to cancer treatment with 22% to 65% of chemotherapy patients experiencing anagen effluvium.1-3 It is reported that 8% of patients consider declining chemotherapy due to CIA risk.7 Although most CIA does not result in permanent hair loss, hair often grows back with altered color, texture, and density.2,4-6 CIA can be devastating for patients and quality of life (QOL) suffers because hair is used for personal expression and characterizes youth, health, beauty, religion and gender identity.8 Women are more impacted than men by CIA.9,10 Patients react differently to CIA depending on their values, cancer prognosis, degree of expected hair loss, physician counselling, and individual coping.4,8 Even if the hair loss itself is not upsetting, the constant reminder of illness can be overwhelming.2,4 Self-esteem declines after cancer diagnosis, and perception of body image can be exacerbated by CIA.3 It is difficult to differentiate CIA-related distress from confounding factors, such as poor cancer prognosis or treatment side effects, and may contribute to lack of significantly increased QOL in patients receiving CIA preventive measures. Many chemotherapeutics, including some targeted therapies, cause CIA. More than 80% of patients receiving anti-microtubule agents experience CIA; the incidence of alopecia is > 60% with alkylators, 60% to 100% with topoisomerase inhibitors, and 10% to 50% with anti-metabolites. Epidermal growth factor receptor inhibitors (EGFRi) cause hair loss in 50% to 90%. Permanent CIA after taxanes and EGFRi has been reported.11 The goal of this cross-sectional study is to determine cancer patients’ baseline knowledge of CIA, the effect CIA has on patients, the general interest in receiving CIA prevention/treatment, and costs patients are willing to accrue for therapy. Ethical Review This study was approved by the University of California, Irvine Institutional Review Board and Chao Comprehensive Cancer Center Skin Disease-Oriented Team. Study Participants and Data Collection Participant enrollment took place over 24 weeks from December 2017 to May 2018. English-speaking, adult patients, currently undergoing chemotherapy infusion, who were able and willing to give verbal consent were enrolled. Patients who could not speak or read English, felt too ill or were disinterested in participating were not enrolled. Study data were collected and analyzed using REDCap (Research Electronic Data Capture).21 Survey Instrument After reviewing CIA literature, three surveys were developed addressing demographics, hair quality satisfaction before and after CIA, QOL, as well as knowledge of CIA and CIA prevention/treatment (Appendix 1). Participants were asked what they would tolerate to minimize or treat CIA including time, side effects, cost, and cancer recurrence risk with predefined response categories. In cases where a 4-point Likert scale could be used, we asked patients to pick answers ranging from “not at all,” “a little,” “quite a bit,” to “very much”. In addition, INTRODUCTION MATERIALS AND METHODS SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 36 we used the only known disease-specific survey, Chemotherapy-induced Alopecia Distress Scale (CADS),22 to assess patient perceptions of body image and overall QOL (Appendix 2). Demographic and Clinical Information Sixty-two patients currently undergoing chemotherapy infusion were enrolled. The majority of participants were female (72.6%), with a mean age range 55 to 64 years. Annual household income ranged from < $25,000 USD (32.0%) to > $200,000 USD (12.0%). All patients were covered by medical insurance, were satisfied with coverage, and were undergoing traditional or targeted chemotherapy for cancer. The most common malignancy was ovarian (16.1%), followed by lung (11.3%), leukemia/lymphoma (11.3%) and pancreas (8.1%); a large proportion of patients were diagnosed with advanced malignancies associated with a high level of disease burden, morbidity and mortality. The most common chemotherapeutics used were carboplatin, cisplatin, oxaliplatin (38.7%), followed by docetaxel, paclitaxel (29.0%) and gemcitabine (17.7%) (Figures 1 and 2). Hair Characteristics After Chemotherapy Prior to chemotherapy, 46.8% of patients were “very much” satisfied with their hair. Only four patients had alopecia before starting chemotherapy [alopecia areata (n=2), lichen planopilaris (n=1) and androgenetic alopecia (n=1)]. Forty-three patients (76.8%) experienced alopecia after starting chemotherapy, with 70.7% reporting hair loss involving the entire scalp; 60.8% of patients reported greater than 50% loss of hair. CIA-associated symptoms included itching (32.1%), flaking and pimples (16.1% each), burning (14.8%), as well as pain, erythema and bumps (14.3% each); 48.2% of patients did not report symptoms. Of the patients that answered “Have you experienced hair regrowth on your scalp?” (n=34), 61.8% reported “yes.” Hair regrew brown (35%), black (30%) or gray (30%), with the same or thinner thickness (45% each), and with the same texture (58.8%). Only 16.7% of patients each reported “very much” and “quite a bit” satisfaction with their hair regrowth, with 45.8% being only “a little” satisfied. Chemotherapy-induced Alopecia Distress Scale The majority of patients who participated in CADS answered either “not at all” or “a little” more frequently than “quite a bit” or “very much” for the entire questionnaire demonstrating that patients were not distressed by CIA (Figure 3). Hair Loss Treatment Knowledge Despite having medical insurance, 77.4% of patients did not know if alopecia treatment costs were covered; of patients who knew their coverage, all patients reported that CIA treatment or prevention would not be covered. 88.1% of patients reported that someone did inform them about CIA-risk, most often by their oncologist (86.3%), but also the oncology nurse (25.5%), family/friends (23.5%), primary care physician (13.7%) or conducting their own research (13.7%); however, 33.4% reported being “a little” or “not at all” informed regarding CIA and 47.3% reported not being aware of CIA prevention/treatment. Surprisingly, 11.5% of patients reported the expectation that their hair would not regrow after chemotherapy; of those reporting their hair would regrow, 88.5% thought it would regrow differently than before. The majority of RESULTS erythema and bumps (14.3% each); 48.2% of patients did not report symptoms. Of the patients that answered “Have you experienced hair regrowth on your scalp?” (n=34), 61.8% reported “yes.” Hair regrew brown (35%), black (30%) or gray (30%), with the same or thinner thickness (45% each), and with the same texture (58.8%). Only 16.7% of patients each reported “very much” and “quite a bit” satisfaction with their hair regrowth, with 45.8% being only “a little” satisfied. Chemotherapy-Induced Alopecia Distress Scale The majority of patients who participated in CADS answered either “not at all” or “a little” more frequently than “quite a bit” or “very much” for the entire questionnaire demonstrating that patients were not distressed by CIA (Figure 3). Hair Loss Treatment Knowledge Despite having medical insurance, 77.4% of patients did not know if alopecia treatment costs were covered; of patients who knew their coverage, all patients reported that CIA treatment or prevention would not be covered. 88.1% of patients reported that someone did inform them about CIA-risk, most often by their oncologist (86.3%), but also the oncology nurse (25.5%), family/friends (23.5%), primary care physician (13.7%) or conducting their own research (13.7%); however, 33.4% reported being “a little” or “not at all” informed regarding CIA and 47.3% reported not being aware of CIA prevention/treatment. Surprisingly, 11.5% of patients reported the expectation that their hair would not regrow after chemotherapy; of those reporting their hair would regrow, 88.5% thought it would regrow differently than before. The majority of patients were “not at all” aware of hair loss therapies such as scalp-cooling (71.9%), hormonal treatments (83.9%), injections SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 37 Figure 1. Patient-reported cancer type (n=62 patients, 70 malignancies). The most common “other” malignancy types were cervical (n=3) and multiple myeloma (n=3). (85.7%), immunosuppressants (90.9%), or topical and/or over-the-counter treatments (54.7%). However, subjects were most knowledgeable about head coverings, such as wigs or wraps, with 61.4% of patients answering they knew “very much” or “quite a bit”. Hair Loss Treatment Interest A majority of patients undergoing chemotherapy (64.9%) reported they were not interested in alopecia treatments. Only 13 participants (21%) continued past the initial question to fully complete this survey section which included measures to discern interest in specific alopecia treatments. Of those that responded, 46.2%, 69.2%, 61.5%, and 79% were “not at all” interested in scalp-cooling, hormones, injections, and immunosuppressants, respectively. On the other hand, 46.6% and 60% of patients were “very much” or “quite a bit” interested in topical and/or over-the-counter treatments and head coverings, respectively (Figure 4). Acceptable Risks to Minimize Hair Loss While a large proportion of patients were not willing to dedicate additional money (47.9%) or time outside of chemotherapy (58.8%) to minimize hair loss, 31.3% were willing to dedicate less than $100 and 26.1% were willing to temporarily dedicate time to treatment. Patients were also unwilling to endure additional side effects (80.9%) or cancer recurrence (94.6%). As compared to previous data that 8% of patients would decline chemotherapy due to CIA, 0% of our participants would have declined chemotherapy (Table 1). SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 38 Figure 2. Patient-reported chemotherapeutic regimen (n=62 patients, 111 chemotherapeutics used). Those chemotherapy regimens marked with an (*) indicate > 60% frequency of CIA.11 SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 39 Figure 3. The CADS demonstrates that the majority of patients participating in this survey were “not at all” distressed by their CIA. SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 40 Figure 4. Although the majority of patients report prior counselling regarding CIA-risk, knowledge of CIA prevention/treatment is lacking. Patients are not interested in undergoing further prevention/treatment of CIA except using either head coverings or topical/over-the-counter products. SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 41 Table 1. Although this population of patients is not well-educated regarding CIA prevention/treatment, these results indicate that they are not interested or motivated to spend money or time on these modalities. No. of patients (n) Percent (%) Would you have declined chemotherapy if you had known about the risk of hair loss? (n=56) No 56 100% What is the highest chance of cancer recurrence you would be willing to risk for at least 50% reduction in hair loss? (n=56) Not willing to risk cancer recurrence 53 94.6 1%-10% or 11%-20% or >75% 1 each 1.8 each 21%-30% or 31%-50% or 51%-75% 0 0 If there was an acceptable treatment to reduce you hair loss by at least 50%, what side effects would you be willing to endure? (n=47) None 38 80.9 Change in appetite 4 8.5 Change in weight 3 6.4 Increased body or facial hair 3 6.4 Skin rash or Nausea, vomiting or diarrhea or Headache or Anxiety, depression or confusion 1 each 2.1 each Sleep changes or Increased risk of infection 0 0 If there was an acceptable treatment that could reduce your hair loss by at least 50% but was not covered by insurance, how much would you be willing to pay out-of- pocket per month? (n=48) Nothing 23 47.9 <$20 7 14.6 $20-49.99 6 12.5 $50-99.99 2 4.2 $100-199.99 5 10.4 $200-499.99 3 6.3 $500-999.99 1 2.1 $1000-1,999.99 0 0 $2000 + 1 2.1 If at least 50% reduction in hair loss is not acceptable for an out-of-pocket cost, what percentage of reduction would be acceptable? (n=23) 50-60% 12 52.2 61-70% 4 17.4 71-80% 2 8.7 81-90% 3 13.0 91-100% 2 8.7 How much time would you dedicate to reducing hair loss by at least 50%? (n=47) None 18 38.8 During chemotherapy infusions 8 17.0 Temporary once daily application or ingestion 8 17.0 Temporary twice daily application or ingestion 9 19.1 Monthly office visits 7 14.9 Lifelong twice daily application of ingestion 4 8.5 Lifelong once daily application or ingestion 3 6.4 Weekly office visits 2 4.3 SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 42 While multiple studies have attempted to quantify CIA’s impact on cancer patients’ QOL, few assess the “value” of hair to individuals undergoing chemotherapy in terms of adverse events, time and monetary worth. According to the current literature, although 58% of patients expect CIA to be the worst adverse event of chemotherapy, only 21.7% rate CIA the worst after completing cancer treatment;26 however, up to 8% of patients would decline chemotherapy had they known about CIA.7 The findings from this study did not support the previous claim as all participants reported they would not have turned down treatment due to CIA risk. Possible factors contributing to these contradictory data include our unique study population in which all patients were covered by medical insurance, currently undergoing chemotherapy infusion, and did not report distress from CIA. Our study location was a tertiary, academic medical center located in Southern California which predisposed our patient population to be one diagnosed with a large proportion of high morbidity-mortality cancers, including but not limited to ovarian, lung, and pancreatic. The patients’ prognosis may have influenced their decision to receive chemotherapy regardless of adverse events including CIA. Another factor that may have significantly contributed to our participants lack of desire for CIA prevention/treatment or associated risks is the relatively minimal distress caused by CIA as measured by CADS. Patient answers may have been biased because only those feeling energetic and healthy participated in the survey. Patients too tired or sick during infusion turned down participation, thus skewing CADS results. Given that our patients were minimally distressed by CIA, it is understandable that they were not willing to undergo further side effects, or monetary/time investments to prevent alopecia or promote regrowth. Of patients willing to pay out-of-pocket, 60% would pay < $100 USD/month, which is consistent with a previous willingness-to-pay study of non-small cell lung cancer patients undergoing chemotherapy in which women were willing to pay as much as 2.1% of their annual income to reduce CIA.25 Given an average $30,000 USD annual income, 2% would be $50 USD/month. Unsurprisingly, given their active malignant disease burden, the majority of our patients did not want CIA prevention/treatment to be accompanied by additional adverse effects. The side effects that a small number of patients were willing to endure included change in weight or appetite and increased facial or body hair. Additionally, our patients were not interested in spending extra time for CIA-prevention. For instance, scalp-cooling requires 30 minutes prior to, the entire time during, and 90 to 120 minutes post-infusion;15,16 based on our patient preferences this seems undesirable. There is an existing knowledge gap in potential CIA prevention/treatment amongst medical providers and patients which needs to be addressed. Our data correlates with other studies assessing CIA therapy knowledge, in which 73% of patients never heard of scalp-cooling, the most recent breakthrough in CIA-prevention, and oncologists reported insufficient knowledge regarding alopecia treatments including scalp-cooling.23 Patients’ lack of knowledge regarding CIA prevention/treatment may have significantly contributed to our findings. Subgroup analysis did not demonstrate any differences in CIA views based on presumed cancer prognosis. We also compared our results from patients actively receiving DISCUSSION SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 43 cancer treatment to a small cohort of patients (n=5), from the same tertiary medical center, who were currently in remission from breast cancer, multiple myeloma and/or leukemia/lymphoma. Universally, patients in remission reported they would have not turned down chemotherapy because of CIA- risk and were also not willing to endure extra monetary cost, time or effort for CIA prevention/treatment. Limitations of this study include difficulty in standardizing results as not all questions were answered by all patients, recall bias and selection bias. The average participant response rate was 60.5%, with the hypothesis that more emotionally taxing or sensitive areas of the survey resulted in lower response rate. The sections of the survey with lowest response were in the middle which does not correlate with respondent fatigue. The survey was initially meant to completed electronically with sections being skipped had the patient answered “no” to the first question. Unfortunately, given infection control within the infusion unit, it was only possible to administer the survey in paper format, thus negatively impacting our response rate. Only English-speaking participants were enrolled to complete this English-only survey. Because many patients reported experiencing some hair loss, a significant control group to compare CIA- distress as measured by CADS is lacking. CIA undeniably affects QOL and should not be ignored. However, in patient populations with high morbidity-mortality cancers currently receiving chemotherapy, concerns for CIA may not be as impactful as previously thought. Poor prognosis may influence the decision to receive treatment despite adverse events such as CIA, contributes to a lack of distress despite losing hair, and explains the hesitance to obtain CIA prevention/treatment with possible further adverse effects. Future studies to obtain information from patients who completed chemotherapy, are awaiting chemotherapy initiation, and/or are using CIA-preventive measures, such as scalp- cooling, need to be completed to see if the results will differ from our patient cohort. Keywords: chemotherapy-induced alopecia, chemotherapy, hair loss, quality of life, prevention, cost-effectiveness ABBREVIATION and ACRONYM LIST: CADS = Chemotherapy-induced alopecia distress scale CIA = Chemotherapy-induced alopecia EGFRi = Epidermal growth factor receptor inhibitor FDA = Food and drug administration QOL = Quality of life REDCap = Research electronic data capture US = United States USD = United States dollar Conflict of Interest Disclosures: None Funding: None Corresponding Author: Margit Juhasz, MD Department of Dermatology and Dermatopathology, University of California-Irvine Gottschalk Medical Plaza, 1 Medical Plaza Drive, Irvine, CA, 92697 Phone: 949-824-7103 Fax: 949-824-8954 Email: mjuhasz@hs.uci.edu References: 1. Lemieux J, Maunsell E, Provencher L. Chemotherapy-induced alopecia and effects on quality of life among women with breast cancer: a literature review. Psychooncology. 2008;17(4):317-328. 2. Beisecker A, Cook MR, Ashworth J, et al. Side effects of adjuvant chemotherapy: perceptions of CONCLUSION SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 44 node-negative breast cancer patients. Psychooncology. 1997;6(2):85-93. 3. Munstedt K, Manthey N, Sachsse S, Vahrson H. Changes in self-concept and body image during alopecia induced cancer chemotherapy. Support Care Cancer. 1997;5(2):139-143. 4. Robinson A, Jones W. Changes in scalp hair after cancer chemotherapy. Eur J Cancer Clin Oncol. 1989;25(1):155-156. 5. Kanti V, Nuwayhid R, Lindner J, et al. Analysis of quantitative changes in hair growth during treatment with chemotherapy or tamoxifen in patients with breast cancer: a cohort study. Br J Dermatol. 2014;170(3):643-650. 6. Lindner J, Hillmann K, Blume-Peytavi U, et al. Hair shaft abnormalities after chemotherapy and tamoxifen therapy in patients with breast cancer evaluated by optical coherence tomography. Br J Dermatol. 2012;167(6):1272-1278. 7. Tierney A, Taylor J. Chemotherapy-induced hair loss. Nurs Stand. 1991;5(38):29-31. 8. Batchelor D. Hair and cancer chemotherapy: consequences and nursing care--a literature study. Eur J Cancer Care (Engl). 2001;10(3):147- 163. 9. Nozawa K, Shimizu C, Kakimoto M, et al. Quantitative assessment of appearance changes and related distress in cancer patients. Psychooncology. 2013;22(9):2140-2147. 10. Fink B, Hufschmidt C, Hirn T, Will S, McKelvey G, Lankhof J. Age, Health and Attractiveness Perception of Virtual (Rendered) Human Hair. Front Psychol. 2016;7:1893. 11. Rubio-Gonzalez B, Juhasz M, Fortman J, Mesinkovska NA. Pathogenesis and treatment options for chemotherapy-induced alopecia: a systematic review. Int J Dermatol. 2018. 12. McGarvey EL, Leon-Verdin M, Baum LD, et al. An evaluation of a computer-imaging program to prepare women for chemotherapy-related alopecia. Psychooncology. 2010;19(7):756-766. 13. Williams J, Wood C, Cunningham-Warburton P. A narrative study of chemotherapy-induced alopecia. Oncol Nurs Forum. 1999;26(9):1463- 1468. 14. Duvic M, Lemak NA, Valero V, et al. A randomized trial of minoxidil in chemotherapy- induced alopecia. J Am Acad Dermatol. 1996;35(1):74-78. 15. Nangia J, Wang T, Osborne C, et al. Effect of a Scalp Cooling Device on Alopecia in Women Undergoing Chemotherapy for Breast Cancer: The SCALP Randomized Clinical Trial. JAMA. 2017;317(6):596-605. 16. Rugo HS, Klein P, Melin SA, et al. Association Between Use of a Scalp Cooling Device and Alopecia After Chemotherapy for Breast Cancer. JAMA. 2017;317(6):606-614. 17. Kiebert GM, Hanneke J, de Haes CJ, Kievit J, van de Velde CJ. Effect of peri-operative chemotherapy on the quality of life of patients with early breast cancer. Eur J Cancer. 1990;26(10):1038-1042. 18. Hershman DL. Scalp Cooling to Prevent Chemotherapy-Induced Alopecia: The Time Has Come. JAMA. 2017;317(6):587-588. 19. van den Hurk CJ, van den Akker-van Marle ME, Breed WP, van de Poll-Franse LV, Nortier JW, Coebergh JW. Cost-effectiveness analysis of scalp cooling to reduce chemotherapy-induced alopecia. Acta Oncol. 2014;53(1):80-87. 20. Fehr MK, Welter J, Sell W, Jung R, Felberbaum R. Sensor-controlled scalp cooling to prevent chemotherapy-induced alopecia in female cancer patients. Curr Oncol. 2016;23(6):e576-e582. 21. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377-381. 22. Cho J, Choi EK, Kim IR, et al. Development and validation of Chemotherapy-induced Alopecia Distress Scale (CADS) for breast cancer patients. Ann Oncol. 2014;25(2):346-351. 23. Peerbooms M, van den Hurk CJ, Breed WP. Familiarity, opinions, experiences and knowledge about scalp cooling: a Dutch survey among breast cancer patients and oncological professionals. Asia Pac J Oncol Nurs. 2015;2(1):35-41. 24. Freedman TG. Social and cultural dimensions of hair loss in women treated for breast cancer. Cancer Nurs. 1994;17(4):334-341. 25. Bernard M, Brignone M, Adehossi A, et al. Perception of alopecia by patients requiring chemotherapy for non-small-cell lung cancer: a willingness to pay study. Lung Cancer. 2011;72(1):114-118. 26. Tierney AJ, Taylor J, Closs SJ. Knowledge, expectations and experiences of patients receiving chemotherapy for breast cancer. Scand J Caring Sci. 1992;6(2):75-80. SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 45 Appendix 1a: Demographic and health information. What is your age? □ 18-24 years old □ 25-34 years old □ 35-44 years old □ 45-54 years old □ 55-64 years old □ 65-74 years old □ 75 years or older Biological sex □ Female □ Male □ Intersex Gender identity □ Female □ Male Sexual orientation □ Asexual □ Bisexual □ Heterosexual □ Homosexual □ Other Marital status □ Divorced □ Living together □ Married □ Separate □ Single □ Widowed □ Unknown/decline to state Race □ American Indian/Alaska Native □ Asian □ Middle Eastern □ Native Hawaiian or Other Pacific Islander □ Black or African American □ White □ Unknown Ethnicity □ Hispanic or Latino □ Not Hispanic or Latino □ Unknown/not reported Religious preferences □ Buddhism □ Christianity □ Hinduism □ Irreligion (Atheist or Agnostic) □ Islam □ Judaism □ Non-affiliated □ Other What is the highest degree of level of school you have completed? If currently enrolled, mark the previous grade or highest degree received. □ 8th grade or less □ 9-11th grade □ High school graduate/GED □ Vocational/technical school □ Associate degree/some college □ Bachelor’s degree □ Advanced degree (MD, PhD, Master’s) □ Unknown/declined to state Employment status □ Employed for wages □ Self-employed □ Unemployed SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 46 □ Homemaker □ Disabled □ Retired □ Unknown/declined to state What is your total household income? □ Less than $25,000 □ $25,000 to $49,999 □ $50,000 to $74,999 □ $75,000 to $99,999 □ $100,000 to $149,999 □ $150,000 to $199,999 □ $200,000 or more Do you have health insurance? □ Yes □ No Do you have children? □ Yes □ No What age are your children? □ Less than 5 years old □ 5 to 10 years old □ 11 to 17 years old □ 18 years or older Frequency of exercise □ Once a week □ 2-3 times a week □ 4-6 times a week □ Daily □ Rarely □ Other Details: ________________________________________ Dietary restrictions □ Vegetarian □ Vegan □ Gluten free □ Other □ None Details: ________________________________________ Medical history What type of cancer were you diagnosed with? You may check multiple boxes. □ Bladder cancer □ Breast cancer □ Colon and rectal cancer □ Endometrial cancer □ Kidney cancer □ Leukemia/lymphoma □ Liver cancer □ Lung cancer □ Melanoma □ Non-Hodgkin lymphoma □ Pancreatic cancer □ Prostate cancer □ Thyroid cancer □ Other If you indicated other type, what is the type of cancer you were diagnosed with? ________________________________________ Was your most recent cancer diagnosis an initial diagnosis, recurrent diagnosis, or second type of cancer diagnosis? □ Initial diagnosis □ Recurrent diagnosis □ Second type of cancer What is the status of your cancer? □ Active □ Stable □ In remission SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 47 □ Recurrence Are you currently receiving treatment for cancer? □ Yes □ No Please indicate which chemotherapies you are (or were) treated with for your cancer. You may check multiple boxes. □ None □ Cetuximab, canertinib, erlotinib, gefitinib, lapatinib, or panitumumab □ Methotrexate □ Bendamustine, cyclophosphamide, estramustine, ifosfamide, mechloretamine, or melphalan □ Carboplatin, cisplatin, or oxaliplatin □ 6-mercaptopurine, 6-thioguianine, azathioprine, or fludarabine □ 5-fluorouracil, capecitabine, or cytarabine □ Vemurafenib or dabrafenib □ Paclitaxel or docetaxel □ Topotecan or irinotecan □ Etoposide, teniposide, or mitoxantrone □ Dacarbazine, procarbazine, or temozolomide □ Sorafenib or sunitib □ Vincristine, cinblastine, vinorelbine, vinflunine □ Other What other chemotherapy agents were part of your treatment regimen? ________________________________________ Why are you not currently receiving treatment? □ I am waiting for my treatments to start □ I completed my treatment regimen □ I declined treatment Other medical problems? You may check multiple boxes. □ Alopecia (hair loss) □ High blood pressure □ Celiac’s disease □ Diabetes □ Eczema □ Endometriosis □ Lupus □ Obstructive sleep apnea □ Ovarian cyst □ Psoriasis □ Rheumatoid arthritis □ Thyroid disease Have you been on hormone replacement therapy? □ Yes □ No Menstrual status □ Pre-menopausal □ Peri-menopausal □ Post-menopausal Age at start of menopause (give best estimate). ________________________________________ Please check the boxes for known family history. □ Alopecia (hair loss) □ Cancer □ Thyroid disease SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 48 Appendix 1b: Hair information. Natural hair details Please choose the options that best describe your hair prior to any chemotherapy treatments or hair loss. What is your natural hair color? □ Blonde □ Brown □ Red □ Black □ Gray □ White □ No hair How much hair did you have prior to your cancer treatment (hair density)? □ Thick □ Medium □ Thin How thick was each strand of hair prior to your cancer treatment (hair diameter)? Medium is approximately the diameter of a piece of thread. □ Coarse □ Medium □ Fine What is your natural hair texture? □ Straight □ Curly □ Wavy □ Other How long was your hair prior to chemotherapy and/or hair loss? □ Hair ended above chin □ Hair ended above shoulders □ Hair ended above armpits □ Hair ended above belly button □ Hair ended at or below belly button How satisfied were you with your hair prior to receiving cancer treatment? □ Not at all □ A little □ Quite a bit □ Very much History of alopecia (hair loss) Were you diagnosed with alopecia (hair loss) before cancer treatment started? □ Yes □ No What type of alopecia were you diagnosed with? You may check multiple boxes. □ Alopecia areata □ Central centrifugal cicatricial alopecia □ Frontal fibrosing alopecia □ Lichen planopilaris □ Patterned hair loss (androgenic, androgenetic, male patterned, female patterned) □ Telogen effluvium □ Traction alopecia □ Other What type of other alopecia were you diagnosed with? ________________________________________ Does anyone else in your family have a history of alopecia (hair loss)? □ Yes □ No □ Unknown If so, who? You may check multiple boxes. □ Mother □ Father □ Sister □ Brother □ Son □ Daughter SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 49 What type of alopecia is in your family history? You may check multiple boxes. □ Alopecia areata □ Central centrifugal cicatricial alopecia □ Frontal fibrosing alopecia □ Lichen planopilaris □ Patterned hair loss (androgenic, androgenetic, male patterned, female patterned) □ Telogen effluvium □ Traction alopecia □ Other Do you have any surgical scars on scalp? □ Yes □ No □ Unknown Chemotherapy-induced alopecia Have you experienced hair loss after cancer treatment started? □ Yes □ No Have you experienced any of these types of hair loss after chemotherapy started? You may check multiple boxes. □ None □ Shedding □ Thinning □ Breakage □ Not growing □ Unknown Location of most hair loss on scalp after chemotherapy started? You may check multiple boxes. □ Front scalp □ Bald patches □ Top of head □ Entire scalp □ Other □ Unknown What percentage of hair did you lose? □ No hair loss □ Less than 25% hair loss □ 25% to 50% hair loss □ 51% to 75% hair loss □ More than 75% hair loss Have you experienced hair loss in places other than your scalp? □ Yes □ No Where have you experienced hair loss other than your scalp? You may check multiple boxes. □ Arms or legs □ Chest, back or abdomen □ Eyebrows □ Eyelashes □ Nose hair □ Pubic area □ Underarms Have you experienced any associated scalp symptoms? You may check multiple boxes. □ Itching □ Burning □ Pain □ Redness □ Flaking □ Bumps □ Pimples □ None □ Other Itching □ Mild □ Moderate □ Severe Burning □ Mild □ Moderate SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 50 □ Severe Pain □ Mild □ Moderate □ Severe Redness □ Mild □ Moderate □ Severe Flaking □ Mild □ Moderate □ Severe Bumps □ Mild □ Moderate □ Severe Pimples □ Mild □ Moderate □ Severe Have you experienced hair regrowth on your scalp? □ Yes □ No □ Unknown Hair color after regrowth? □ Blonde □ Brown □ Red □ Black □ Gray □ Other Hair density after regrowth? □ Thicker □ Thinner □ Same Hair diameter after regrowth? □ More coarse □ More fine □ Same Hair texture after regrowth? □ More curly □ More wavy □ More straight □ Same After you completed your chemotherapy regimen, when did regrowth start? □ Still receiving chemotherapy □ Less than 1 month □ 1 month to 3 months □ 3 months to 6 months □ 6 months to 1 year □ 1 year to 2 years □ More than 2 years How much of your hair has regrown as compared to your hair before cancer treatment? □ Less than 25% □ 25% to 50% □ 51% to 50% □ More than 75% How satisfied are you with your hair after it has regrown? □ Not at all □ A little □ Quite a bit □ Very Much Hair care practices Previous hair care? You may check multiple boxes. □ Curly perm □ Relaxer □ Coloring □ Blow dryer SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 51 □ Hot iron/curling iron/flat iron □ Hot comb □ Hot rollers □ Braids □ Weave □ Other □ Unknown Other previous hair care treatments? ________________________________________ Did you shave your head or do you plan to? □ Yes □ No When did you shave your head or when are you planning on shaving your head? □ Before chemotherapy starts □ Before hair loss starts □ Once hair loss starts □ After a significant amount of hair is lost Do you or did you wear anything that covers your head? You may check multiple boxes. □ None □ Wrap □ Har □ Wig □ Extensions □ Other Details: ________________________________________ SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 52 Appendix 1c: Hair loss treatment options. Did someone talk to you about the risk of hair loss due to chemotherapy? □ Yes □ No Who discussed the risk of hair loss with you? You may check multiple boxes. □ Primary care physician □ Oncologist □ Patient educators □ Nurse □ Support groups □ Family and/or friends □ Research on your own Did you feel well-informed about hair loss? □ Not at all □ A little □ Quite a bit □ Very much How much do you agree with the statements below? My hair will regrow the same as it was before cancer treatment. □ Not at all □ A little □ Quite a bit □ Very much My hair will regrow, but it will regrow different than it was before cancer treatment. □ Not at all □ A little □ Quite a bit □ Very much My hair will not regrow. □ Not at all □ A little □ Quite a bit □ Very much Are you aware about hair loss treatments? □ Yes □ No Are you aware about these hair loss treatments, including the procedure and cost? Scalp cooling □ Not at all □ A little □ Quite a bit □ Very much Hormones □ Not at all □ A little □ Quite a bit □ Very much Injections □ Not at all □ A little □ Quite a bit □ Very much Immunosuppressants □ Not at all □ A little □ Quite a bit □ Very much Topical and/or over-the-counter treatments □ Not at all □ A little □ Quite a bit □ Very much Head coverings (wigs or wraps) □ Not at all □ A little □ Quite a bit □ Very much SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 53 Are you interested in hair loss treatment? □ Yes □ No Are you interested in these hair loss treatments? Scalp cooling □ Not at all □ A little □ Quite a bit □ Very much Hormones □ Not at all □ A little □ Quite a bit □ Very much Injections □ Not at all □ A little □ Quite a bit □ Very much Immunosuppressants □ Not at all □ A little □ Quite a bit □ Very much Topical and/or over-the-counter treatments □ Not at all □ A little □ Quite a bit □ Very much Head coverings (wigs or wraps) □ Not at all □ A little □ Quite a bit □ Very much If there was an acceptable treatment to reduce your hair loss by at least 50%, what side effects would you be willing to endure? You may check multiple boxes. □ None □ Increased body or facial hair □ Anxiety, depression, or confusion □ Change in appetite □ Change in weight □ Nausea, vomiting, or diarrhea □ Headaches □ Skin rash □ Changes in sleep □ Increased risk of infection If you have insurance, does your insurance cover the cost of hair loss treatments? □ Yes □ No □ I do not know □ I do not have insurance If there was an acceptable treatment that could reduce your hair loss by at least 50% but was not covered by insurance, how much would you be willing to pay out of pocket per month? □ Nothing □ Less than $20 □ $20 to $49.99 □ $50 to $99.99 □ $100 to $199.99 □ $200 to $499.99 □ $500 to $999.99 □ $1000 to $1999.99 □ $2000 or more If at least 50% reduction in hair loss is not acceptable for an out of pocket cost, what percentage would be acceptable? □ 50% to 60% □ 61% to 70% □ 71% to 80% □ 81% to 90% □ 91% to 100% SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 54 How much time would you dedicate to reducing hair loss by at least 50%? You may check multiple boxes. □ None □ During chemotherapy infusions □ Temporary once daily application or ingestion □ Temporary twice daily application or ingestion □ Lifelong once daily application or ingestion □ Lifelong twice daily application or ingestion □ Weekly office visits □ Biweekly office visits □ Monthly office visits What is the highest change of cancer recurrence you would be willing to risk for at least 50% reduction in hair loss? □ Not willing to risk cancer recurrence □ 1% to 10% □ 11% to 20% □ 21% to 30% □ 30% to 50% □ 50% to 75% □ More than 75% risk of recurrence Would you have declined chemotherapy if you have known about the risk of hair loss? □ Yes □ No SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 55 Appendix 2: Chemotherapy-induced alopecia distress scale (CADS). 22 Physical The area is itching. □ Not at all □ A little □ Quite a bit □ Very much The area is burning or prickling or resulting in pain. □ Not at all □ A little □ Quite a bit □ Very much Emotional I feel different from others. □ Not at all □ A little □ Quite a bit □ Very much I am dissatisfied with my appearance. □ Not at all □ A little □ Quite a bit □ Very much I lose confidence about the future. □ Not at all □ A little □ Quite a bit □ Very much I am easily irritated and stressed. □ Not at all □ A little □ Quite a bit □ Very much I feel depressed. □ Not at all □ A little □ Quite a bit □ Very much I feel lonely. □ Not at all □ A little □ Quite a bit □ Very much Activity I have difficulty doing personal care such as bath and make-up. □ Not at all □ A little □ Quite a bit □ Very much I experience limitations doing leisure activities. □ Not at all □ A little □ Quite a bit □ Very much I feel sicker because of my hair loss. □ Not at all □ A little □ Quite a bit □ Very much I do not like it when people find that I have cancer because of my hair loss. □ Not at all □ A little □ Quite a bit □ Very much I have problems going out shopping and to restaurants. □ Not at all □ A little SKIN January 2020 Volume 4 Issue 1 Copyright 2020 The National Society for Cutaneous Medicine 56 □ Quite a bit □ Very much I always wear a wig or scarf to hide hair loss. □ Not at all □ A little □ Quite a bit □ Very much Relationship I am worried about relationships with family and friends. □ Not at all □ A little □ Quite a bit □ Very much I am worries about my relationship with my spouse or partner. □ Not at all □ A little □ Quite a bit □ Very much I am worried about my sexual relationship with my spouse or partner. □ Not at all □ A little □ Quite a bit □ Very much