Disease experience of patients with acute radiodermatitis: a qualitative study

doi:10.21203/rs.3.rs-4689396/v1

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Disease experience of patients with acute radiodermatitis: a qualitative study

https://doi.org/10.21203/rs.3.rs-4689396/v1

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Objectives

To understand the true feelings and disease experience of radiodermatitis patients and to provide reference for formulating accurate intervention and support strategies for this group.

Methods

A semi-structured interview was conducted by using an objective sampling with patients who received radiotherapy in the tertiary hospital in Shanxi province from October 2023 to January 2024. With the help of Nvivo software, Colaizzi's seven-step analysis and triangulation were used to analyze the Interview data and extract themes.

Results

The disease experience of patients with acute radiation dermatitis can be summarized into 4 themes:(1) Decreased quality of daily life: sleep quality decreased, living habits forced to change;(2) Negative psychological experience: anxiety, decreased self-efficacy;(3) Disease coping style: active response, negative avoidance;(4) Resource requirements: desire for phased access to disease information, desire for more cost-effective preventive medicines.

Conclusions

The disease experience of patients with acute radiation dermatitis has specific and diverse attributes. Nurses should pay attention to the status of patients and self-perceived burden, guide patients to establish correct disease cognition and improve self-efficacy so as to promote positive coping. Strengthen the support of family, hospital and society to meet the needs of patients effectively. Through scientific and effective intervention to improve the quality of life and reduce the incidence of adverse outcomes of patients.

Acute Radiation Dermatitis

Disease Experience

Qualitative Research

Radiotherapy

Nowadays, globally, cancer is on the rise[^1].GLOBOCAN predicts that the number of cancer cases will increase to 28.4 million by 2040[^2],which indicates that the global cancer burden is very serious. Radiotherapy is widely used in the clinical treatment of cancer, more than 50% of cancer patients need radiotherapy[^3],it is called three traditional cancer therapies together with surgery and chemotherapy. However, when radiation kills tumor cells, it also causes an acute reaction in the irradiated area of normal skin [^4].95% of cancer patients receive radiotherapy will appear acute radioactive dermatitis (Acute Radiation Dermatitis, ARD) [^5].

ARD plays an negative effects in the physiological, psychological and functional levels of patients [^6].With the progress of radiotherapy, the degree of ARD gradually increases, which can cause pain, anxiety and insomnia, even wet desquamation, and increase the possibility of infection [^7]. It not only affects the patient's quality of life, but also causes the treatment plan to be delayed or terminated early, reducing the treatment effect[^8].Furthermore, patients with ARD usually due to body image problems, leading to a certain degree of social isolation and a negative impact on interpersonal relationships [^9].

Previous studies focused on preventing the occurrence of ARD, but ignored the patient 's disease experience. Therefore, the goal of this article was to use in-depth interviews and thematic analysis to understand patients' true feelings and disease experience during radiotherapy, in order to provide evidence to support the development of targeted intervention and support strategies for this population.

Participants

The study subjects were selected by purposive sampling from radiotherapy patients in the tertiary hospital in Shanxi province from October 2023 to January 2024. Eligibility criteria for study subjects included the following:(1) Patients diagnosed with cancer based on pathological examination;(2) Patients with ARD after receiving radiotherapy;(3) Having the normal understanding and the expression ability, the communication barrier-free;(4) Being willing to participate in the interview and signing the informed consent form. Exclusion criteria:(1) With a major psychiatric diagnosis or severe cognitive impairment；(2) A patient who has received or is receiving other psychotherapy;（3）Skin allergy. A total of 11 patients were included, and the sample size was based on the no new themes would emerge and the information was saturated.

The study was approved by the ethics committee of the Second Hospital of Shanxi Medical University. (approval number: 2023, ethics number 190). In accordance with the declaration of Helsinki, all participants were informed of the study’s purpose, methods, privacy, and signed informed consent forms.

Determine the interview outline

Researchers designed a preliminary outline of interview by reviewing the literature and combining with the research purpose, and continued to improve the outline through the interviews with two patients. The final interview content was determined as follows: (1) Please talk about the physical and psychological feelings after the occurrence of ARD? (2) How has ARD affected your life? (3) How did you cope after the ARD incident? (4) What kind of help would you like for the problem you are facing? (5) Do you have anything else to add?

Data collection

The interview location selected the psychotherapy room in the ward and before the formal interview, the researcher explained the purpose and significance of the study and told the respondents the interview is about their skin changes. The whole interview and non-verbal behaviors, such as facial expressions and actions were recorded, and obtained written informed consent. Each interview until the respondents had no new content to express, according to the actual situation, time was controlled in 20 ~ 40 minutes. Meanwhile, the researchers remained neutral during the interview, positively responded to the interviewees' answers and encouraged them to express their true thoughts to reduce participants' psychological stress. In order to protect the privacy of the interviewees, numbers P1 ~ P11 were used instead of their real names in sequence and the results were presented anonymously.

Data analysis

The transcribed data from the interviews was converted into textual content within 24hours and marked the interviewees' emotions and expressions in the corresponding positions, so as to better analyzed their psychological experience and emotional reaction at that time. With Nvivo software and then used the Colaizzi analysis method to analyze data[^10]. The steps are as follows:(1) Carefully reading the transcribed data to understand it fully; (2) Extracting meaningful narratives;(3) Summarizing and refining significant points of view;(4) Encoding them, forming themes from the coding viewpoints;(5) describing each theme in detail;(6) identifying and summarizing similar views to develop corresponding theme concepts;(7) verifying the results with the research subjects to ensure authenticity and integrity of the interview results.

Quality control

Researchers systematically studied qualitative research in advance, understood qualitative research methods and interview techniques, and moreover, conducted pre-interviews before the formal interviews to ensure the feasibility of the study. During the interview, the patient's statement was attentively listened to, any unclear information was promptly queried and recounted for clarification. In the analysis of the data, this research adopted the method of triangular mutual evidence. This involved two researchers independently coding all information, they questioned and supplemented each other's interpretations of the material, summarizing and extracting key statements, developing themes and engaging in multiple discussions with field experts to finalize the themes and mitigate bias. The final results were shared with the participants for verification and validation. Corresponding modifications and refinements were made based on the feedback received to ensure the authenticity of the results.

A total of 11 patients,4 males and 7 females, were interviewed, aged between 43 and 81 years, with a mean age of 62.27 years. Details are shown in Table 1.

TABLE 1. Information of Interview Participants.

Number	Gender	Age (years)	Education	Occupation	Cancer	Dose of radiation	Number of radiation	Grading of ARD
P1	Male	78	High school degree	Veteran	Laryngeal cancer	64Gy	32	Ⅱ
P2	Female	43	College degree	Farmer	Breast cancer	54Gy	27	Ⅱ
P3	Female	81	Primary school degree	Retirement	Breast cancer	56Gy	28	Ⅲ
P4	Male	65	Primary school degree	Farmer	Nasopharyngeal cancer	62Gy	31	Ⅲ
P5	Male	56	High school degree	Farmer	Esophageal cancer	66Gy	33	Ⅱ
P6	Female	69	High school degree	Unemployment	Breast cancer	58Gy	29	Ⅱ
P7	Female	44	College degree	Accounting	Breast cancer	54Gy	27	Ⅱ
P8	Male	78	High school degree	Retirement	Esophageal cancer	64Gy	32	Ⅲ
P9	Female	48	Primary school degree	Farmer	Breast cancer	58Gy	29	Ⅱ

Continued TABLE 1. Information of Interview Participants.

Number

Gender

Age

(years)

Education

Occupation

Cancer

Dose of radiation

Number of radiation

Grading of ARD

P10

Female

Primary school degree

Farmer

Laryngeal cancer

60Gy

Ⅱ

P11

Female

Illiteracy

Farmer

Breast cancer

56Gy

Ⅲ

Finally, a total of 4 themes and 9 subthemes were eventually extracted, as shown in Table 2.

TABLE2. Qualitative Analysis: Themes and Subthemes.

Themes	Subthemes
Theme 1：Decreased quality of daily life	Subthemes 1: Sleep quality decreased
	Subthemes 2: Living habits forced to change
Theme 2：Negative psychological experience	Subthemes 1: Anxiety
	Subthemes 2: Decreased self-efficacy
Theme 3：Ways of disease coping	Subthemes 1: Active response
	Subthemes 2: Negative avoidance
Theme 4：Resource Service Requirements	Subthemes 1: Desire for phased disease information
	Subthemes 2: Demand for more cost-effective preventive medication

Theme 1：Decreased quality of daily life

Sleep quality decreased

There is a strong two-way relationship between sleep and pain[^11].Some patients in this study reported that their sleeping patterns was affected by pain, itching and other physical discomfort caused by ARD, and even impact their daytime living condition.

P6: “Old people sleep itself shallow, this area was itchy and painful, which kept me sleeplessness throughout the night. I didn't want to rely on pain medication constantly, as excessive use of medications can have negative consequences.”

P11: “Unexpectedly, post-radiotherapy, I experienced a persistent burning sensation in my chest, making it impossible to sleep due to the intense pain. I felt drained of energy everyday and my overall physical state is deteriorating.”

Living habits forced to change

In order to avoid the aggravation of ARD, patients had to change their diet and exercise habits.

P10: “I had to wear a silk scarf everyday to conceal my skin and I had learned that allergies can exacerbate ARD, so I was afraid of consuming seafood out of fear that it would worsen my condition.”

P1: “I was afraid that sweating would make the ARD worse, and I hesitant to engage in physical activity.”

P4: “I feel even thinner because of this disease and here (dermatitis). I concerned that I couldn't be able to maintain proper nutrition, so even when I had no appetite I also allowed myself eat more.”

Theme 2：Negative psychological experience

Anxiety

The patients' lack of experience in preventing ARD and the symptoms caused by ARD are often distressing them, which aggravated the burden experience of patients. Most of them exhibit varying degrees of anxiety.

P4: “The skin of the neck was almost rotten. It was scary to watch myself and I afraid of infection.”

P9: “I wanted to scratch it because it's itching here (breast skin). It's really annoying.”

P6: “The doctor told me that ARD was easy to occur in the late stage of radiotherapy. I applied the medicine according to the doctor's instructions, but it still appeared. I couldn't sleep well and always worried about it.”

P11: “I saw a patient with ARD much worse than me in the hospital, I was afraid my skin as rotten as him.”

Decreased self-efficacy

Although ARD is not life-threatening, but it can change the appearance of the skin, cause social barriers, and reduce self-efficacy.

P6: “The wound was lumpy and I didn't want anyone to see it. It was disgusting.”

P7: “Whenever doctors and nurses look at my skin, I feel embarrassed.”

P2: “After I had ARD on the breast, I was afraid of people to approaching me even my husband. I let him sleep in separate bed.”

P10: “I used to love square dancing in skirts, but now I didn't participate anymore. I felt that I didn't want to see people anymore.”

P8: “My child drove me to the hospital for radiotherapy and I didn't want to go out to see anyone. I afraid that I may be perceived as someone distinct from the average person by others.”

Theme 3：Ways of disease coping

Active response

A few patients had risk prevention awareness and worried about the occurrence of adverse disease, could actively self-management.

P9: “I searched relevant information on the Internet and learned that there were many adverse effects of ARD, so I insisted on using topical medicine every day. Although I also had ARD, it is milder than others.”

P10: “As a doctor, my husband advised me to use topical medicine every day. Since he was professional, I had faith in him. You look at my neck, it seemed not so rotten but just a little peeling and redness, he said it is inevitable.”

Negative avoidance

After undergoing surgery, chemotherapy, radiotherapy and other treatments, most patients focus on their cancer management and have negative attitudes about the prevention of ARD for many different reasons, including cognitive deficiencies. Especially the elderly are more likely to give up self-management.

P2: “I was too busy with chemoradiotherapy and reexamination to pay attention to ARD.”

P8: “I was over 70 years old, just sustain life was enough for me. Why I still care about this?”

P4：“If I had foreseen the outcome, I would have listened to the doctor's counsel at the beginning. My lazy and negligence led to the present predicament.”

Theme 4：Resource Service Requirements

Desire for phased disease information

Due to the lack of professional knowledge and guidance, patients are eager to obtain disease information and help in stages. Before radiotherapy, patients hoped to be given a detailed description of ARD so that they could understand its development; During radiotherapy, the most urgent need was avoiding the occurrence ARD, while some patients also wanted guidance on skin protection; In the ARD stage, their most pressing concern mainly focused on alleviating the symptom of ARD.

P1: “I knew I was going to undergo radiotherapy, so I searched relevant information. However the Internet has a lot of information that it was challenging to discern which was accurate. I wish someone would tell me exactly what prevention should be done at each stage before, at the beginning, and at the end of radiotherapy.”

P6: “I thought patients could be given a brochure with illustrative pictures about ARD when they were hospitalized in the oncology department to remind them of this, many people are unaware of the severity of ARD.”

P9: “From the beginning of radiotherapy, how to protect the skin, what topical medicine to use, how many times to use, is living habits and diet adjustment the same as before radiation therapy? How should we adjustment? A lot of questions were sourced from the Internet by ourselves, the doctor did not specifically address these matters.”

Demand for more cost-effective preventive medication

ARD prophylaxis is a long-term treatment that needs to be repeated on a large area of skin every day. Since the current drugs' cost and efficacy fail to satisfy the ideal demand, and they impose a considerable economic burden on patients, who consequently desire more effective and cost-efficient alternatives.

P2: “Our family were farmers, and we had spent all our savings on treatment. I also had a son in college so sometimes I didn't use preventive medication, because a bottle of it was about 500 yuan, which was too expensive. Did you know any cheaper drugs？”

P7: “The doctor asked us to use this ointment from the first day, I applied it three or four times a day because the radiotherapy area is so large. The medicine was quite expensive, did you know any alternative options?”

P4：“I used this topical medication before I have ARD, but I still got it. Look at my skin, it's all broken.”

P9: “Maybe the medication was poorly absorbed, my skin broke ultimately. The skin became itchy and painful during the later stage of radiotherapy. Were there any other cheaper and more effective drugs available?”

Focusing on the status of self-perceived burden in ARD patients, improve quality of daily life. Findings show that most of the patients had significant self-perceived burden and negative psychological experiences such as anxiety, reduced self-efficacy, which is consistent with previous research findings[^12][13].In addition, the overall life quality of patients had decreased, mainly manifested in decreased sleep quality and forced changes in daily habits. On the one hand, cancer patients believe that counseling about daily life problems will waste the working time of medical staff [^14],and on the other hand, when switching from different life roles to the patient role, people often experience role maladjustment and more negative emotions [^15].Consequently, nurses should proactively initiate with patients to understand their specific negative emotions, guide them to say their true feelings in the heart and implement targeted measures to assistant patients discover the value and meaning in life, enhance their sense of self-efficacy; Pay attention to the patient's sleep status, guide them to establish good sleep habits, and promote blood circulation through appropriate traditional Chinese medicine techniques such as foot soaking and head massage, thereby ensuring sleep quality; While providing concise and informative education on nutritional needs, physical activities for radiotherapy patients and their family members to promote the correct change of patients lifestyle.

According to the definition of the National Cancer Institute (NCI), social support is a network of family, friends, neighbors, and community members that is available in times of need to give psychological, physical, and financial help[^16].Studies had shown that social support helps patients to counteract the effects of depression, anxiety, and other negative psychological influences by strengthening their own management behaviors [^17][18].Family support significantly and negatively correlated with patients' anxiety and depression[^19];Peer support can relieve patients' negative emotions while guarantee the realization of self-worth and improve self-identity [^20][21].Therefore, it's essential to build a communication platform, establish a WeChat group and actively carry out a patient communication meeting, which can help patients to improve communication and obtain a sense of group comfort. Besides, nurses should timely feedback patients' condition to their families to enhance family support. Family members should initially adjust their own mindset and engage in positive communication with the patient in order to enhance the psychological resilience of ARD patients, thereby improving their quality of daily life.

Guide ARD patients to establish correct disease perceptions, improve self-management behaviors. The results of this study showed that patients' self-management ability needs to be improved, the participants pointed out that another a considered key in influencing the coping ability of patients is lack of professional information support, which is consistent with the Walsh's[^22]finding. It may be related to that most patients passively acquire ARD knowledge and lack the ability to judge the authenticity of Internet related information. Omran et al [^23]showed that self-management efficacy plays an important role in self-management and prevention of cancer patients, patients with high self-management efficiency can better effectively manage their diseases and improve their quality of life[^24].Changing the motivation is a necessary factor for improving self-management effectiveness, thereby, using health education based on the information-motivation-behavioral skills model to improve self-management efficacy in radiotherapy patients is necessary[^25].As disseminators and guides of healthy behavior, nurses initially should collect the information needs of ARD patients and then carry out targeted interventions on patients' concerns，such as before the occurrence of ARD, nurses prioritize explaining the concept of ARD, its risk factors, clinical manifestations and the process of its occurrence and development to patients. Additionally, nurses should provide guidance on ARD prevention; During the radiotherapy process, they closely observed the skin changes and the promotion of preventive measures can be strengthened through educational manuals, science popularization videos and other means to enable patients to fully understand ARD; Once ARD manifest, nurses promptly introduce the life guidance for alleviating the symptoms of ARD and medication guidance. In addition, web-based information resources may be the key to meeting patients' information needs[^26]. Internet platforms can be used to provide patients with the latest nursing information on ARD, by inviting experts in related fields to answer patients' questions online and leveraging microblogging public number to preach continuous and comprehensive health education. It can solve the problem that patients cannot identify the authenticity of Internet information, promote patients to establish a comprehensive and systematic ARD knowledge system, fully understand the importance of self-management and then improve the self-management motivation and behavior.

In the future, researchers can develop ARD self-care management software and establish an electronic file of personal skin conditions. Through such software, patients can conveniently upload skin photos, and then the software will assess the ARD symptom classification and recommend the corresponding self-management strategies. It not only help patients to establish a self-management system but also conducive to improving the ability of patients to self-management.

Enhance the multi-dimensional social support system to bolster the degree of social support available to ARD patients. The results of this study indicated that patients are eager to seek more cost-effective preventive drugs. Due to the current radiotherapy protective agents on the market have problems such as low bioavailability, fast metabolism, brief internal circulation time, and limited efficacy, which make it difficult to achieve a satisfactory protective effect under the toxicity threshold[^27],and the price is expensive. Emerging nanomedicines provide a better opportunity to address the aforementioned problems.Compared with molecular drugs, nanomedicines have many superior properties, namely, better chemical stability in multiple physiological environments; appropriately sized nanomaterials that can be efficiently absorbed by cells; a relatively long circulation time and low clearance rate[^28],which making them become the potential candidate for ARD prevention. Zhao M's research [^29]has confirmed that Fullerenols with high free radical scavenging ability, can be used for skin radioprotection. This also suggests that we have opportunity to develop new drugs in order to meet the needs of patients for more effective medications. Therefore, it is recommended that researchers improve the bioavailability of existing small molecule radiation protectants or develop new types of radiation protectants to meet the medication needs of patients. In addition, so far, some medical insurance policies in certain regions have not included wound care supplies in the reimbursement scope of medical insurance. Consequently, it is recommended to strengthen the social support system for ARD patients from multiple dimensions, such as special reimbursements, social allowances and other measures to alleviate the pressure on patients due to economic difficulties, and further improve the social support level of ARD patients.

Study limitations

This study only conducted one interview with patients and didn't follow up on them. In the future, longitudinal follow-up can be conducted to gain a more comprehensive understanding of the disease experience of ARD patients and to explore more suitable intervention models and support strategies. In addition, the respondents come from the same hospital and are all Chinese. Different cultural backgrounds may lead to different disease experiences. In the future, we can expand the province to conduct multicenter studies to improve the results of this study.

This study conducted semi-structured interviews with 11 ARD patients and found that they had various disease feelings and needs, mainly manifested in four aspects, including decline in quality of life, negative psychological experience, ways of disease coping, resource service requirements. As a result, nurses should focus on the status of self-perceived burden in ARD patients, value their disease perception and experience, take targeted measures, such as building a patient communication platform, establish a WeChat group, actively carry out a patient communication meeting, developing intelligent assistance systems to reduce their negative physical and mental experiences；Guide ARD patients to establish correct disease perceptions, timely and accurately answer patients' doubts, improve their self-management behavior; Enhance the multi-dimensional social support system such as special reimbursements, social allowances to improve the social support level of ARD patients. By providing targeted scientific and effective interventions, improve patients' quality of life and adverse outcomes.

Data availability

The datasets generated or analyzed in this study are available from the corresponding author on request.

Author contributions

Jinli GUO and Fan Bai contributed to the study conception and design. Data collection and analysis were performed by Qi Wang, Xiaoning Shi and Zheng Li. Wang Qi and Xiaoning Shi wrote the original draft. All authors contributed to the article and approved the final manuscript.

Acknowledgements

Thanks to all participants for their participation in this study and to the clinical department for their support.

Conflict of interest statement

There are no conflicts of interest related to this study.

Funding declaration

No funding was received for conducting this study.

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Disease experience of patients with acute radiodermatitis: a qualitative study

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