Article

Chemotherapy-Induced Alopecia: Examining Patient Perceptions and Adherence to Home Haircare Recommendations

Jamie Sitarz

Cara Spencer

scalp cooling, chemotherapy-induced alopecia, hair care, self-care
CJON 2022, 26(2), 190-197. DOI: 10.1188/22.CJON.190-197

Background: Chemotherapy-induced alopecia is one of the most distressing side effects experienced by patients with cancer. Although most chemotherapy-induced alopecia is temporary, this side effect can cause significant anxiety and may lead to refusal of curative treatment.

Objectives: The purpose of this study was to examine patient perceptions and measure adherence to haircare recommendations throughout the course of treatment while using scalp cooling therapy in addition to learning which haircare recommendations were the most onerous.

Methods: This was a cross-sectional observational and descriptive study that used repeated-measures survey data. Participants completed electronic surveys during each treatment corresponding with the current treatment phase.

Findings: Final survey results revealed that most participants adhered to haircare recommendations with little difficulty and that the recommendations had an insignificant impact on daily lives.

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    Chemotherapy-induced alopecia is one of the most distressing side effects experienced by about 65% of patients with cancer undergoing treatment (Dua et al., 2017; Paterson et al., 2021). As an acquired, sudden, and severe form of alopecia, chemotherapy-induced alopecia can have a negative impact on body image, sexuality, self-esteem, and quality of life and is often a visible confirmation and constant reminder of a cancer diagnosis (Nangia et al., 2017; Paterson et al., 2021; Zdenkowski et al., 2016). For some women with breast cancer, losing their hair is reported to be more traumatizing than losing a breast to mastectomy and can cause patients to refuse curative treatment (Nangia et al., 2017). In addition, the incidence of permanent chemotherapy-induced alopecia or incomplete hair regrowth in patients at three years postchemotherapy is about 40% (Kang et al., 2018).

    Background

    Cancer cells often have excessively high metabolic rates, division rates, and energy demands. Similarly, hair follicle cells rapidly divide, with more than 80% of hair follicles growing at any given time. Chemotherapy agents target cells with these characteristics, which makes hair follicles vulnerable to chemotherapy (Dunnill et al., 2017).

    Scalp cooling is an optional treatment to prevent chemotherapy-induced alopecia and focuses on reducing the effects of chemotherapy agents on hair follicles. Cold caps, such as the Penguin Cold Cap® or Chemo Cold Cap®, are similar to ice hats that are placed on the head during scalp cooling therapy. These caps are changed routinely by the patient as the cap warms. Patients independently rent these caps and associated freezer units from outside vendors and bring them to the infusion center for each treatment (Katz, 2017; Kruse & Abraham, 2018).

    Scalp cooling systems, such as the DigniCap® and Paxman®, use cooling caps with temperature-regulating sensors. These sensors allow scalp temperatures to be continuously monitored and evenly regulated. These caps remain intact throughout treatment as coolant is circulated through the cap from a base control unit. Scalp cooling systems are purchased by cancer treatment centers and rented to patients during chemotherapy infusions (Dignicap, 2020; Katz, 2017; Kruse & Abraham, 2018).

    The mechanism of scalp cooling is not completely understood. Established theories state that scalp cooling causes vasoconstriction to the vessels of the scalp, which reduces perfusion to the hair follicle. This decreases the metabolic processes of the chemotherapy agent on the rapidly dividing hair follicle cells (Dunnill et al., 2017). Although not 100% effective, the DigniCap Scalp Cooling System prevented hair loss in 66.3% of patients with breast cancer receiving adjuvant chemotherapy, compared to a control group in which all patients experienced significant hair loss (Rugo et al., 2017).

    Scalp Cooling Procedures

    Based on manufacturer guidelines provided by Dignitana (Dignicap Delta, 2019), patients are instructed to wet their hair and comb it flat prior to each scalp cooling treatment. The cooling cap is then placed on the head securely, ensuring direct contact with all areas of the scalp. Once secured, the base unit is turned on and set to reach the goal temperature over a period of 30 minutes. Once the goal temperature is achieved, the chemotherapy infusion can begin. Scalp cooling continues throughout the infusion and up to an additional 180 minutes postinfusion, depending on the chemotherapy regimen administered (Dignicap Delta, 2019).

    Scalp cooling is generally well tolerated, although Fehr et al. (2016) reported a 1.8% dropout rate due to intolerance. Most side effects from scalp cooling are mild and may include chills, dizziness, headache, nausea, paresthesia, scalp discomfort, itching, and scalp ulcerations (Kruse & Abraham, 2018; Nangia et al., 2017). See Figure 1 for scalp cooling contraindications and risks.

    Home Hair Care Recommended Modifications

    Chemotherapy can cause scalp irritation and may make the hair dry, brittle, and more difficult to manage (Dignitana, Inc., 2017). For these reasons, it is important for patients who use scalp cooling therapy to handle their hair gently throughout therapy and for several months after to minimize stress to the scalp, hair, and hair follicle (Dignitana, Inc., 2017). Therefore, patients are provided with information about home haircare recommendations prior to the initial treatment (Dignitana, Inc., 2017; Rossi et al., 2017; Vasconcelos et al., 2018). See Figure 2 for a summary of the haircare recommendations.

    Currently, little is known about the efficacy of haircare recommendations for patients with cancer undergoing scalp cooling therapy. A comprehensive literature review showed a dearth of information on haircare recommendations and their impact on chemotherapy-induced alopecia outcomes, patient knowledge or perceptions about haircare recommendations, or haircare recommendations adherence. In addition, little is understood about the nurses’ impact and role in supporting these patients throughout the course of their therapy.

    The purpose of this descriptive observational study was to investigate patient perceptions and adherence to haircare recommendations during the course of their treatment while using scalp cooling therapy. Specific aims of this research were to (a) investigate participants’ perceptions and adherence to the recommendations, (b) learn which haircare recommendations were the most onerous, and (c) gain perspective of how the haircare recommendations affected patients’ daily lives as they progressed through the course of their treatment. This included pretreatment and initial treatment perceptions of haircare recommendations, midtreatment perceptions, and a final treatment summary.

    Methods

    This was a cross-sectional observational and descriptive study that used repeated-measures survey data collected from December 2018 through December 2020. Institutional review board authorization and approval was obtained from the Colorado Multiple Institutional Review Board in Aurora.

    Sample and Setting

    This study was conducted at three UCHealth ambulatory oncology infusion centers in Highlands Ranch, Littleton, and Lone Tree, Colorado (Metro Denver). Adult patients with cancer aged 18–75 years with a solid tumor diagnosis who used scalp cooling therapy were eligible to participate. Additional inclusion criteria included the ability to read at a 10th grade level or above and have self-determined cognition. Patients used the Dignicap Scalp Cooling System available in these cancer treatment centers.

    Procedures

    Three online surveys were created to assess patient haircare recommendations perceptions and adherence, using Microsoft Forms to address different treatment phases. The initial survey captured pretreatment and initial treatment perceptions, the midtreatment survey measured adherence and the level of difficulty managing the haircare recommendations, and the final survey provided understanding about the participant summative perceptions and adherence to the haircare recommendations. The self-report surveys were accessed and completed from patients’ electronic devices or electronic devices borrowed from the treatment centers. The surveys were anonymous; however, participants were asked to develop a personalized login consisting of the month and day of their mother’s birthday combined with the name of the high school they attended (e.g., 0320Washington). This personalized login allowed investigators to match repeated surveys with the same participant throughout their treatments.

    Likert-type scales were used to measure adherence and level of difficulty of the haircare recommendations. Level of adherence options were always, usually, sometimes, rarely, and never. Difficulty level options were easy, manageable, difficult, and impossible. Each haircare recommendation topic first measured adherence, followed by a question related to level of difficulty. The haircare recommendations questions were as follows:

    •  Did you limit hair washing to twice a week (Likert-type adherence scale)? This recommendation was (Likert-type difficulty scale).

    •  Did you limit hair combing to no more than twice a day using your fingers or a wide-tooth comb (Likert-type adherence scale)? This recommendation was (Likert-type difficulty scale).

    •  Have you avoided the use of hair dryers and curling irons (Likert-type adherence scale)? This recommendation was (Likert-type difficulty scale).

    •  Have you avoided hair chemicals (Likert-type adherence scale)? This recommendation was (Likert-type difficulty scale).

    •  Have you avoided hair washing during heavy shedding (Likert-type adherence scale)? This recommendation was (Likert-type difficulty scale).

    •  Have you avoided the use of hair accessories? (Likert-type adherence scale). This recommendation was (Likert-type difficulty scale).

    One survey was completed by each participant per treatment. In addition, the final survey asked for summative patient perceptions related to total hair loss, the haircare recommendations’ impact on daily lives, and overall impressions and recommendations regarding the haircare recommendations and scalp cooling.

    Data Analysis

    Survey data were analyzed using descriptive statistics to discern the variances between patient adherence and the level of difficulty adhering to the haircare recommendations in each treatment phase. Short-answer questions pertaining to impact on daily life provided qualitative insight into the haircare limitations and experiences. Themes were identified using Strauss and Corbin’s (1990) open and axial coding, which emphasizes identifying actions and interactions related to the research question.

    Results

    A total of 43 women aged 31–75 years were consented and participated in the study. Age ranges were as follows: 31–40 years (n = 9), 41–50 years (n = 12), 51–60 years (n = 9), 61–70 years (n = 9), and 71–75 years (n = 4). There were 35 initial treatment, 174 midtreatment, and 29 final treatment surveys completed. A total of 17 participants completed surveys through all three treatment phases. Ten participants stopped scalp cooling early, but none stopped because of side effects.

    The initial treatment surveys revealed that 94% (n = 33) of participants reported that they expected that the haircare recommendations would either be easy or manageable. Participants were also asked to identify which haircare recommendations they expected to be the most difficult to adhere to and could choose multiple haircare recommendations. Participants identified avoiding hair washing during heavy shedding as the least difficult haircare recommendation to adhere to pretreatment and avoiding hair accessory use as the most difficult. See Table 1 for scores.

    Adherence to the haircare recommendations and level of difficulty were similar between midtreatment and final surveys. Adherence to avoiding hair chemicals was highest in midtreatment surveys, with 89% (n = 155) always adhering and 10% (n = 18) usually adhering, and final surveys, with 93% (n = 27) always adhering and 7% (n = 2) usually adhering. This haircare recommendation was also noted to be the easiest to adhere to at midtreatment, with 76% (n = 133) of participants responding that it was easy and 23% (n = 40) indicating that it was manageable. During the final treatment, 79% (n = 23) of participants revealed that avoiding hair chemicals was easy and 21% (n = 6) said it was manageable.

    The hardest haircare recommendation to adhere to at midtreatment was avoiding hair washing during heavy shedding, with 43% (n = 74) of participants responding that this haircare recommendation was easy and 48% (n = 83) responding that it was manageable. The final survey reported that 54% (n = 15) of respondents thought this haircare recommendation was easy and 32% (n = 9) thought it was manageable. Overall, the final survey results demonstrated more optimistic scores than midtreatment scores as the participants completed their therapy.

    In addition, 96% (n = 27) of all participants reported that using scalp cooling was worth the time, effort, cost, discomfort, and modifications to their home hair care, and 97% (n = 28) of participants would recommend scalp cooling to others. Also, 38% (n = 11) rated their experience as excellent and 41% (n = 12) rated it as good. The remainder of the participants ranked the experience as fair.

    Discussion

    Despite the lack of published studies and evidence to date regarding the efficacy of haircare recommendations associated with scalp cooling therapy, this study revealed that overall, the participants had positive perceptions of scalp cooling therapy and would recommend this therapy to other patients with cancer. Most of the study participants who always or usually adhered to the haircare recommendations reported that they were easy or manageable to follow and that they had a negligible impact on their daily lives.

    On the initial survey, participants reported that limiting hair washing to twice a week and avoiding the use of hair accessories would be the most difficult to adhere to and avoiding hair washing during heavy shedding would be the easiest. However, avoiding hair washing during heavy shedding was identified as the most difficult haircare recommendation to follow in the midtreatment and final treatment surveys. As reported on the final survey, participants indicated that the haircare recommendations had no major impact on their daily lives and they were not an inconvenience at all. This was different than predicted by the study researchers because of the potentially onerous requirements of these guidelines and contrary to the findings documented by Paterson et al. (2021). Although not specific to haircare recommendations related to scalp cooling, Paterson et al. (2021) found that haircare supportive needs had a significant impact on daily lives, triggering a need to actively camouflage chemotherapy-induced alopecia with wigs, hats, scarves, and other haircare strategies, with an associated economic burden of purchasing and maintaining these items.

    Boland et al. (2020) found that chemotherapy-induced alopecia is a highly individual experience and that there are varying levels of distress that this side effect can cause. Concealed side effects or symptoms that are not visible can be a barrier for patients to obtain effective support systems (Drury et al., 2020; Trusson & Pilnick, 2017). The self-determination theory regarding intrinsic motivation may factor into a patient’s willingness to use scalp cooling therapy and to adhere to the associated haircare recommendations. Motivation is essential for any behavior change and is based on the principle of personal choices (Flannery, 2017). In other words, individuals will behave in ways that lead to outcomes that are inherently valued (Flannery, 2017). Therefore, it appears the participants of the study were motivated to adhere to the haircare recommendations because of the high value placed on their hair, physical appearance, and privacy, regardless of the behavioral modification required. In addition, the haircare recommendations required perseverance during the course of their treatment. Using the repeated-measures methodology allowed for tracking of adherence and perceived level of difficulty with the haircare recommendations over time. Although pretreatment therapy perceptions were different, once participants began following the haircare recommendations, their adherence was generally consistent during midtreatment and final treatment surveys.

    This constancy may be explained by the theory of perceived self-efficacy (PSE), developed by Hoffman (2013). PSE provides insight into a person’s belief about his or her ability to behave in ways that help manage a specific symptom, such as chemotherapy-induced alopecia. A patient chooses a plan of action, determines the degree of effort required and the amount of perseverance necessary, and then becomes empowered to change behaviors to obtain a desired outcome. Conversely, as PSE decreases, patients may have less motivation toward behavioral changes. When applied to scalp cooling, patients may not be able or willing to adhere to the haircare recommendations without the presence of a high valuation of their hair, motivation, and perseverance, as found in self-efficacy. It may be helpful for nurses to discuss these concepts with patients who are considering scalp cooling therapy. Being fully informed of the details of scalp cooling and the associated haircare recommendations prior to therapy can underscore the importance of oncology nurses educating and setting appropriate expectations.

    Overall, self-care and self-advocacy may be empowering to patients with cancer by allowing them to gain control and responsibility over aspects of their cancer experience. Instead of viewing the haircare recommendations as onerous or difficult, patients may be able to apply motivation, perseverance, and self-efficacy toward their symptom management in a tangible manner. Chin et al. (2021) established a link between higher self-efficacy and better self-care, noting that self-efficacy triggers greater symptom management and empowers more self-care. In essence, the positive feedback loop inspires patients to take greater responsibility and adopt behaviors that address their chemotherapy-related symptoms, including hair retention. Encouraging and supporting patients’ self-care activities can be a vital role for nurses throughout scalp cooling therapy.

    Survey short-answer responses validated chemotherapy-induced alopecia as one of the worst side effects of chemotherapy. One participant reported, “Saving my hair [was] a huge blessing. I would not have done chemo[therapy] without it.” These responses also affirmed the impact that scalp cooling and haircare recommendations had on patients’ daily lives and provided insight into some management techniques that participants used. See Figure 3 for short-answer comments.

    Overall, the distress related to alopecia cannot be underestimated, and interventions to mitigate hair loss are essential (Paterson et al., 2021). Bitto et al. (2020) found that patients’ quality of life can be greatly affected by scalp cooling therapy’s effectiveness and noted that the well-being of patients who prevented hair loss was significantly higher than patients who stopped scalp cooling therapy early or did not use scalp cooling at all.

    Limitations

    Several limitations are worth noting. First, men are not represented in the study because they declined scalp cooling therapy. Secondly, the study was cross-sectional and, thereby, captured participants at various stages of treatment, limiting the number of start-to-finish participants. In addition, the surveys were self-report and the repeated-measures methodology introduces report bias. This occurs when participants know their haircare recommendations adherence will be assessed during each treatment, influencing adherence rates. Lastly, the study findings were based on patient responses when using one cooling system. This may affect the generalizability of these findings.

    Implications for Nursing

    Interventions to mitigate chemotherapy-induced alopecia are essential because it is a distressing side effect for patients with cancer. Oncology nurses can play a vital role in helping patients manage chemotherapy-induced alopecia by establishing appropriate expectations prior to initiation of treatment, providing education about scalp cooling therapy and haircare recommendations, and reinforcing teaching with each treatment. Encouraging the patients’ self-care activities provides a positive hair retention loop; motivated patients perform self-care activities, adherence to haircare recommendations improves, and higher adherence results in more hair retention and improves quality of life, resulting in greater self-care activities. Nurses who address haircare recommendations management during each visit may ensure a positive patient experience and desired hair retention, which is critical to patients’ quality of life.

    Conclusion

    Because chemotherapy-induced alopecia is one of the most distressing side effects of chemotherapy, scalp cooling therapy is offered as an option to mitigate hair loss. This requires home haircare modifications that can alter home self-care regimens, cause discomfort, and increase time in the infusion center by as many as three hours with each treatment. Despite these challenges, many patients with cancer choose scalp cooling therapy. Based on this study’s findings, haircare recommendations associated with scalp cooling therapy can be easy to manage and are not onerous on patients’ daily lives. In addition, participants would recommend this therapy to others and found it worth the time, effort, and haircare modifications. Armed with this knowledge, nurses can set appropriate expectations about the haircare recommendations, provide education related to the most challenging behavior modifications, and encourage self-care to ensure optimal hair retention outcomes and quality of life.

    About the Author(s)

    Jamie Sitarz, BSN, RN, OCN®, is a level IV clinical oncology RN at UCHealth Cancer Center–Highlands Ranch Hospital, and Cara Spencer, PhD, RN, FNP-BC, is a research nurse scientist at UCHealth in Aurora, both in Colorado. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Mention of specific products and opinions related to those products do not indicate or imply endorsement by the Oncology Nursing Society. Sitarz can be reached at jamie.sitarz@uchealth.org, with copy to CJONEditor@ons.org. (Submitted April 2021. Accepted October 24, 2021.)

     

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