|RESEARCH IN BRIEF
|Year : 2019 | Volume
| Issue : 1 | Page : 60-64
Distress and coping in cancer patients experiencing chemotherapy-induced alopecia
Rini Wils1, Anandha Ruby Jacob1, Emily Susila Daniel1, Raju Titus Chacko2, S Reka3
1 College of Nursing, CMC, Vellore, Tamil Nadu, India
2 Departments of Medical Oncology, CMC, Vellore, Tamil Nadu, India
3 Departments of Biostatistics, CMC, Vellore, Tamil Nadu, India
|Date of Web Publication||09-Oct-2019|
Mrs. Rini Wils
College of Nursing, CMC, Vellore, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Alopecia is a major issue related to body image. Hair symbolises life and identity, plays an important role in social communication reflecting the social class, sex, profession and religious belief. Chemotherapy-induced alopecia is a condition that can affect psychosocial well-being and quality of life of a cancer patient resulting in anxiety, depression, a negative body image and lowered self-esteem. This study was designed to assess the level of distress and coping in cancer patients experiencing chemotherapy-induced alopecia. A descriptive study design was used, and a convenience sampling technique was used to select 150 subjects experiencing chemotherapy-induced alopecia in the oncology wards of a tertiary hospital. Chemotherapy-induced alopecia distress scale was used to assess the level of distress and chemotherapy-induced alopecia coping scale was used to assess various coping strategies among subjects. A high level of distress was experienced by 59.3% of the subjects and 60% of them had moderate coping. There was a weak negative (r = −0.083) and a weak positive (r = 0.238) correlation between the level of distress and passive and active coping strategies, respectively. The significant factors associated with distress were gender, financial source for treatment, diagnosis, type of chemotherapeutic drug, number of cycles offered and major coping strategy adopted. Factors such as number of children, family income, duration of illness and occupation of the patient showed significant association with the coping strategies. This study highlighted the need for the health-care team to be more sensitive to the less explored area of cancer treatment which would lead to an improved quality of life throughout the patient's illness process.
Keywords: Cancer, Chemotherapy-induced alopecia, distress, coping
|How to cite this article:|
Wils R, Jacob AR, Daniel ES, Chacko RT, Reka S. Distress and coping in cancer patients experiencing chemotherapy-induced alopecia. Indian J Cont Nsg Edn 2019;20:60-4
|How to cite this URL:|
Wils R, Jacob AR, Daniel ES, Chacko RT, Reka S. Distress and coping in cancer patients experiencing chemotherapy-induced alopecia. Indian J Cont Nsg Edn [serial online] 2019 [cited 2019 Dec 11];20:60-4. Available from: http://www.ijcne.org/text.asp?2019/20/1/60/268696
| Introduction|| |
Cancers figure among the leading causes of morbidity and mortality worldwide, with approximately 14 million new cases every year. The number of new cases is expected to rise by about 70% over the next two decades. The incidence of cancer in India is 70–90/100,000 population, and cancer prevalence is established to be around 2.5 million with over 800,000 new cases and 550,000 deaths occurring each year. It is also said that there are almost 55,000 new cancer cases per year in Tamil Nadu. Chemotherapy is one of the modalities used in cancer treatment; these agents affect both normal and malignant cells affecting many body systems resulting in various side effects.
Chemotherapy-induced alopecia, a cutaneous side effect of cancer therapy is an acute diffuse hair loss caused by dystrophic anagen effluvium. The incidence and severity of chemotherapy-induced alopecia appears to be dependent on many factors such as the half-life of the active metabolite of the chemotherapy agent(s), mono or combination therapy, the dose, the length of the infusion and the condition of the hair. Hair loss usually begins 7–10 days following the initiation of chemotherapy, and is quite prominent within 1 or 2 months of treatment or within 2–3 weeks following chemotherapy. The toxic effects on the hair are almost always reversible. Chemotherapy-induced hair loss is a less harmful side effect but is considered to be one of the most traumatic, psychologically distressing aspects of cancer patient care and has also been cited as the most disturbing anticipated side effect by up to 58% of women preparing to receive chemotherapy.
Nursing care of patients undergoing cancer therapy should not only aim at treating the disease but should also focus on the psychological distress that these patients undergo during the course of their treatment due to various changes that they experience physically and emotionally, and help them gain control over the situation. In the light of results from literature, personal experiences and as per the rising need and the researcher's interest, this study was undertaken to assess the impact of alopecia that these patients experience during the course of treatment. Literature on the impact of alopecia in cancer patients in the Indian population is very minimal. The findings of this study will bring to light the intensity of the problem and coping strategies adopted by patients to handle it depending on their cultural and societal acceptance.
The objectives of the study were to:
- Assess the level of distress among cancer patients experiencing chemotherapy-induced alopecia
- Assess the level of coping adopted by cancer patients experiencing chemotherapy-induced alopecia
- Identify the relationship between the distress and coping among cancer patients experiencing chemotherapy-induced alopecia
- Determine the association between level of distress and coping in cancer patients experiencing chemotherapy-induced alopecia with socio-demographic and clinical variables.
| Methods|| |
A descriptive research design was used. Subjects who experienced and reported scalp and body hair loss of 25% or more following at least one cycle of anticancer drugs with moderate-to-severe alopecia were included in the study. Convenient sampling technique was used to select 150 subjects. Inclusion criteria for the study were patients >18 years who had been diagnosed with any type of cancer who had received at least one cycle of anticancer drugs which cause severe and moderate alopecia and experiencing >25% of hair loss, those experiencing hair loss for the first time and those who were able to read and write either Tamil, English, Hindi, Bengali or Telugu. Subjects with cognitive impairment and those experiencing hair losses following radiation therapy or due to other causes were excluded from the study.
Chemotherapy-induced alopecia distress scale (CADS) and the chemotherapy-induced alopecia coping scale were used in this study. The CADS developed by Cho et al. describes the level of distress ranging from a score of 0–51. It consists of 17 items in four domains: Physical (2), Emotional (6), Activity (6) and Relationship (3). Respondents were instructed to indicate on a four-point Likert scale on each statement (0 = not at all, 1 = a little, 2 = quite a bit and 3 = very much). The severity of chemotherapy-induced alopecia was measured by median values. A score of 14 or above indicated high distress and 0–13 indicated low distress. The level of distress of each domain was calculated by summing each domain questionnaire and dividing by median scores. Reliability was established by excellent internal consistency (Cronbach's alpha coefficient = 0.95 for total; 0.77–0.95 for subscales) and its validity index was Cronbach's alpha 0.95 for total.
The chemotherapy-induced alopecia coping scale had 20 items graded on a four-point Likert scale. Active coping strategies included: preparedness, appearance fixing and support. Passive coping strategies included: acceptance, avoidance and distraction. The content validity index of the tool was 0.96. Total scores were calculated by summing responses for all items: score of 75%–100% showed adequate coping, score of 50%–74% revealed moderate coping and a score of <50% was considered inadequate coping. Instruments were translated into Hindi, Bengali, Tamil and Telugu and back translated into English. The feasibility of the translated tools was checked by pilot study.
Ethical clearance was obtained from the Institutional Review Board. Data were collected over a period of 6 weeks after getting the written informed consent from the subjects. It took 15–20 min to complete the questionnaire on distress and coping in the language of their choice which included English, Tamil, Hindi, Bengali and Telugu.
| Results|| |
The data were analysed using the Statistical Package for the Social Sciences version 17.0. A value of P < 0.05 was considered statistically significant in this study. Descriptive statistics was used to present the frequency and percentage of the demographic variables. Chi-square and correlation were used to analyse the study findings.
Majority of subjects in the study were females (70.7%), 80% were married, 64% belonged to nuclear families and 82% were from rural areas. Majority of the subjects (48%) were with breast cancer and 77.3% received combination therapy.
The study findings revealed that 59.33% of the subjects experienced higher distress levels and 40.67% had lower levels of distress [Table 1].
|Table 1: Level of distress among cancer patients with chemotherapy-induced alopecia|
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Findings of the study revealed that 92% of the subjects experienced lower distress in their physical domain and 37.3% had higher distress in their activity domain [Figure 1].
|Figure 1: Distribution of subjects according to level of distress due to chemotherapy-induced alopecia with respect to various domains.|
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The overall findings of the study also revealed that 60% of the subjects coped moderately well, 37.3% coped adequately and 2.7% had inadequate coping with chemotherapy-induced alopecia. Majority (76.7%) who used support as coping strategy had adequate coping. Adequate coping was found in 65.3% and 64% of subjects who used acceptance and avoidance strategies [Figure 2].
|Figure 2: Distribution according to adequacy of coping strategies among cancer patients experiencing chemotherapy-induced alopecia.|
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Findings showed that there was a negative correlation (r = −0.083) between the level of distress and passive coping strategies. As the level of distress increases the passive coping method decreases. Whereas, there was a weak positive correlation (r = 0.238) between the level of distress and active coping at a statistically significant level of P < 0.05 [Table 2].
|Table 2: Correlation between the level of distress and coping strategies among patients with chemotherapy-induced alopecia|
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The study findings showed that there was a significant association between the level of distress and the gender of the patient (P = 0.040) and the financial source for treatment (P = 0.007). There was also a significant association between the level of distress and the diagnosis of the patient (P = 0.035), the type of chemotherapeutic drug (P = 0.035) and the number of cycles offered (P = 0.046). Degree of alopecia did not have any significance with the level of distress in the study.
Findings in relation to coping in the current study revealed that there was a significant association between the level of passive coping and number of children (P = 0.009) and the family income (P = 0.039). There was also a significant association between passive coping and duration of illness (P = 0.034), a significant association between active coping and the occupation of the patient (P = 0.006), but no significant association was found between active coping and clinical variables.
| Discussion|| |
The study findings revealed that 59.33% of the subjects experienced high distress levels and 40.67% had low levels of distress. It was observed that 79.8% of female patients experienced high distress level, whereas only 20.2% of males experienced a higher distress level. A study with a cross-sectional survey design conducted by Choi et al. on 168 breast cancer patients in Korea, also showed that 55.3% of female patients experienced higher distress from alopecia. There were similar findings seen in a cohort study by Macquart-Moulin et al., which compared side effects experienced by patients, showed that 50% of the subjects were 'quite a bit' and 'very much' distressed with chemotherapy-induced alopecia. Hair loss was correlated with distress (P = 0.05).
The CADS has four domains. They are physical, emotional, activity and relationship domains. Findings of the study revealed that 92% of the subjects experienced lower distress in their physical domain and 37.3% had high distress in their activity domain. About 30% and 24% of subjects had high distress levels in emotional and relationship domains, respectively. Within the relationship domain subjects who were worried and distressed about their sexual relationship with their spouses were 19.3%, whereas Fobair et al., in their study found that hair loss was not related to a decrease in sexual activity.
The overall findings of the study revealed that 60% of the subjects coped moderately well, 37.3% coped adequately and 2.7% had inadequate coping with chemotherapy-induced alopecia. Support was used as the best means of coping by 76.7% of the subjects and appearance fixing (17.3%) was the least used coping strategy. An article by Borsellino and Young, on anticipatory coping stated that 40% of subjects coped by talking with other women who had experienced alopecia and 23% talked to health professionals. This shows that most of them seek support to handle chemotherapy-induced alopecia. Another study on cancer patients by Borg and Kennedy, revealed that active coping strategies were utilised by 67%. Emotional support was relatively used, indicating the use of support groups in dealing with alopecia. Positive reframing, active coping, planning and instrumental support was used by 60%–70% of the patients. A qualitative study by Power and Condon also showed that participants considered formal and informal support to be important in helping them cope with hair loss. Evidence from various studies as well as this study reveals that social support use is a vital coping strategy used by patients with alopecia in various population groups.
Findings also revealed that adequate preparedness was seen in 54.7% of the subjects. Most of the men (60%) felt that their hair should have been shaved before experiencing hair fall. Nearly 65.3% had accepted the change in their body image and 64% used distraction such as watching television or getting back to the job as their means of coping with alopecia. Social stigma, lack of social communication and interaction, avoidance of social gatherings and festivals was seen in 31.3% of the subjects. Thus, poor quality of living, poor self-concept and self-esteem would have been experienced by those who adopted passive coping strategies. Rosman identified that the most commonly used strategies in coping was camouflage and hiding. Similar findings were observed in the present study where 40.7% used wigs or scarf to hide their hair loss. Other findings showed that 54% were prepared for hair loss, and 59.3% were satisfied with the information provided by the health-care team. Studies have reported that patients who were well informed about alopecia adjusted and coped with it better than those who were not.
The study findings also showed that there was a negative correlation (r = −0.083) between the level of distress and passive coping strategies, which explains that as passive coping method increased, level of distress decreased. The findings of the high proportion of subjects using acceptance (65%) and distraction (64%) as a passive coping method could have been a reason for low distress. Avoidance, one of the passive coping method may lead to poor self-concept and can increase distress. There was a weak positive correlation (r = 0.238) between the level of distress and active coping at a statistically significant level of P < 0.05 which reveals that as the level of distress increased the active coping methods also increased. Majority of the participants (76.7%) who sought social support in this study had high coping. Several studies have evaluated various coping strategies. Similar to these study findings, it is reported that acceptance and positive reframing were related to low distress and a better outcome. Denial and avoidance coping is tied to higher levels of distress and is also a prospective predictor of distress when confronting a major stressor or chronic burden. A study by McGarvey et al. showed that patients have higher active coping scores than passive coping scores (P< 0.001).
The study findings showed that factors that were associated with levels of distress were gender of the patient (P = 0.040), financial source for treatment (P = 0.007), diagnosis of the patient (P = 0.035), type of chemotherapeutic drugs (P = 0.035) and the number of cycles offered (P = 0.046). A similar study by Can et al. found that age, level of income (P = 0.01), diagnosis (P = 0.007) and type of chemotherapeutic agent (Taxanes) (P = 0.001), affected subjects' body image due to alopecia caused by chemotherapy. Another study showed that patients who were employed had experienced significantly higher altered appearance distress compared to unemployed patients (P< 0.05). In terms of monthly income, patients who had a higher income (>$3000) reported a better body image than patients with lower income (P< 0.05). Education and income had a positive effect on appearance distress. It was also revealed that the degree of alopecia did not have any significance with the level of distress in the study.
Findings in relation to coping in the current study revealed that there was a significant association between level of passive coping and the number of children and the family income. There was also a significant association between passive coping and duration of illness, a significant association between active coping and the occupation of the patient, but no significant association was found between active coping and clinical variables. Literature data on coping with alopecia are very limited. Each individual has full control of the coping strategies. A study done by Tabolli et al. on patients with Androgenetic alopecia concluded that active emotional coping was associated with gender (P = 0.001) and avoidant coping was associated with emotional stability (P = 0.001). Results show that passive coping such as acceptance and distraction were found in more number of subjects which probably may have been influenced by the duration of illness and the family income which made it possible for involving in distracting activities. Subjects who had to return to work would have needed to actively take measures to prepare themselves for integration. Social support might also have been better in work areas.
| Conclusion|| |
The results of the study have brought to light an area not explored in cancer treatment. Patients undergoing chemotherapy experience an altered body image, feeling different, rejection and social withdrawal due to the loss of hair. Although the perceptions of losing hair vary with each individual, the impact it has on their psychosocial well-being is of great concern. Passive coping though preferred by most of the cancer patients can lead to higher levels of anxiety and depression due to social isolation caused by 'cancer stigma'. Support from family members, health personal and faith in God was the most preferred coping strategy adopted by cancer patients as identified in this study. Hence, we as health professionals need to support them with appropriate coping and self-care strategies that would help overcome this burden. It is thus the role of a nurse who is the primary caregiver in health care to address this sensitive issue appropriately and enhance a sense of well-being in these patients to promote a better quality of life.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2]