Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study

G Model EUJIM 497 No. of Pages 9

European Journal of Integrative Medicine xxx (2015) xxx–xxx

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Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study Yunna Kima,1, Hee-yeon Shinb,1, Wonkyung Moonb , Seung-Hun Choa,* a b

Hospital of Korean Medicine, Kyung Hee University Medical Center, Kyung Hee University, Hoegi-Dong, Seoul, Republic of Korea College of Korean Medicine, Kyung Hee University, Hoegi-Dong, Seoul, Republic of Korea

A R T I C L E I N F O

A B S T R A C T

Article history: Received 23 June 2015 Received in revised form 30 December 2015 Accepted 30 December 2015 Available online xxx

Introduction: An increasing number of cancer patients, including those with lung cancer, use complementary and alternative medicine (CAM) in addition to their cancer treatment. As qualitative studies documenting the quality of life (QoL) of lung cancer patients using CAM is limited, this study focused on exploring perceived changes in QoL of lung cancer patients following their experiences of CAM treatment. Methods: In 2013, in-depth semi-structured tape recorded interviews were conducted with 15 Korean lung cancer patients who had reported a CAM treatment experiences in a Korean medical hospital specializing in cancer. The transcriptions were analyzed using NVivo10, and patients’ experience of cancer was investigated using van Manen’s four fundamental existential categories which relate to lifeworld experiences. Results: Patients exhibited the greatest change in two of the categories; ‘lived body’ and ‘lived relations’. Three final themes were identified, ‘loss of self’, ‘being the same as before’, and ‘revitalization’. Cancer diagnosis accelerated the loss of ‘self’ but also gave patients a chance to concentrate on and regain ‘self’. Participants demonstrated that ‘being the same as before’ was the most important factor for quality of life and also for treatment decisions. CAM treatment was deemed acceptable when the patients felt revitalized and they were able to live as before and when they were respected. Conclusion: As CAM gave a chance for patients to concentrate on ‘self’ and regain the will to continue with treatment, CAM potentially improves lung cancer patients’ QoL. Effective application of CAM during cancer treatment should be investigated. ã 2016 Elsevier GmbH. All rights reserved.

Keywords: Complementary and alternative medicine Lung cancer Quality of life Qualitative study Lifeworld experience

1. Introduction The American Cancer Society estimates that by the end of 2015, over 220,000 new lung cancer cases will occur and approximately 160,000 people in United States will die from lung cancer [1]. Lung cancer is the 2nd main type of cancer in terms of incidence and the main cause of death for both sexes. According to Korea Central Cancer Registry, lung cancer was the fourth most frequent cancer (10.0%, 21,753 out of a total of 218,017) in Korea in 2011. It has been reported that lung cancer has a poor five-year survival rate (20.7%), compared with the five-year survival rate for all cancers which is 66.3% [2].

* Corresponding author at: Kyung Hee University Medical Center, Kyung Hee Univerity, Hoegi-dong, Dongdaemun-gu, Seoul 130-702, Republic of Korea. Fax: +82 2 958 9187. E-mail address: [email protected] (S.-H. Cho). 1 These authors contributed equally to this work.

There are various definitions of quality of life (QoL), but healthcare providers in cancer care tend to address the QoL by focusing on the concerns of their patients. Improvements in quality of life (QoL) are clinically important, and the US Food and Drug Administration have considered QoL as the key end point outcome measure for the approval of an anticancer drug [3,4]. Several cancer studies have investigated the QoL of cancer patients. As symptoms, treatment side effects, and the symbolic effect of being a cancer patient determine QoL, these QoL considerations play a substantial role in patients’ decisions [5,6]. There are some standardized questionnaires to estimate the QoL objectively, such as the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30, but these lack the subjective aspect of the QoL. There is no agreement on the definition of the QoL, however researchers agree that assessing the quality of life should be multifaceted, including physical status (consequences of cancer, treatment side effects), emotional wellbeing, and social relationships. A qualitative method is appropriate to encompass all the components of the QoL for cancer experience [7].

http://dx.doi.org/10.1016/j.eujim.2015.12.014 1876-3820/ ã 2016 Elsevier GmbH. All rights reserved.

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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`Lung cancer has significant unpleasant effects on the quality of life (QoL) of individuals and their family, friends, and acquaintances who are affected by it. Due to the symptom burden associated with lung cancer, symptom management is one of the most important issues in patients with lung cancer [8]. Degner and Sloan [9] found that patients with lung cancer had higher levels of symptom distress than those with other cancers. The qualitative study describing the QoL of women with non-small cell lung cancer (NSCLC) reported numerous serious disruptions to their psychological and social wellbeing and viewed their illness as a challenge [10]. An increasing number of patients with cancer appear to be using CAM. Ernst and Cassileth [11] reviewed 26 surveys from 13 countries and found that the average CAM use across studies of adult patients with cancer was 31.4% (range 7–64%). Cancer patients reported that they had used CAM as part of taking more responsibility for their own care, to improve their health and psychosocial well-being, and to control their symptoms. Furthermore, CAM use has been shown to improve patients’ QoL and satisfaction with care [12]. Even though there are some studies relating to the use of complementary and alternative medicine (CAM) among patients with cancer [13], studies on Korean medicine for lung cancer are poorly documented. Most studies have focused on alternative treatments for cancer, and there are few published research papers that investigate the use of Korean medicine for symptom management, especially in patients with lung cancer [8]. Furthermore, despite a number of studies addressing the increasing use of CAM, the information focusing on the use of acupuncture and herbal medicine in the treatment of cancer has not been well-reported. To our knowledge there are no previous studies examining QoL of lung cancer patients receiving CAM therapy, using qualitative research methodology. The present study focuses on the data analysis of a study on the QoL of cancer patients receiving CAM care, and their expectations of using CAM. 2. Methods 2.1. Participants In August 2013, a purposive sample of patients with lung cancer was obtained by recruiting participants from Soram Korean Hospital in Seoul, Korea, a Korean medical hospital specializing in cancer. All the participants were Korean patients who had lung cancer and who were being treated by traditional Korean medical methods. CAM treatments provided in this hospital included pharmacopuncture, acupuncture, herbal medicine, distillation/ breathe-in-therapy, moxibustion, and cupping, meditation, yoga, aroma therapy, etc. The participants who voluntarily decided to take part in the study and provided written informed consent were invited to interview. Among the volunteers, those who meet the inclusion criteria and had sufficient experience of CAM were invited. Participants were eligible to join the study if they were aged >19 years, had been diagnosed with lung cancer, had received Korean treatment for cancer at least 12 times, and had sufficient physical and mental capacity to have an interview in fluent Korean. Exclusion criteria included (1) cognitive deficits or impaired hearing and (2) a co-morbid medical illness other than cancer that may affect the quality of life. Eligible participants were invited to an interview, at which time they voluntarily decided to take part in the study and provided written informed consent. Sampling continued until theoretical saturation was confirmed. 2.2. Data collection The purpose and procedure of this study was explained by the researchers and the all the participants signed consent forms

before the interview. No complaints were raised during the whole interview process. The present study was performed under Institutional Review Board regulations. The sociodemographic characteristics and disease/treatment information of the participants were collected by questionnaire before the interview started (Tables 1 and 2). Patients’ tumor stage was recorded using the TNM classification system. Treatment and time since treatment were also summarized. All disease/treatment information was extracted from the hospital charts. Patients rated their current activity level using the Karnofsky Performance Status Scale (KPSS), ranging from 0% to 100%. Two interviewers (WM and HS) conducted interviews in a private room in the hospital where the participants were recruited. Each interview lasted 20–30 min. A list of topics guided the interview process, however participants were also encouraged to talk generally on the topic. A semi-structured format was used in each interview, and focused on four topics: (1) Tell me about your cancer and your course of treatment. (2) Tell me how your cancer has affected your quality of life (Interviewee did not directly mention ‘QoL’ and the questions encompassed physical change, psychological change, social interaction, and life and death based on Ferrell et al. [14]. (3) Tell me about your experiences of CAM treatment. (4) Tell me about the differences you feel after receiving CAM treatment. (5) Tell me what you think separates CAM from biomedicine (Table 3). The entire interview was recorded and transcribed by the interviewers. Interviews were performed in Korean, and the quotations presented in this manuscript were thereafter translated into English.

Table 1 Demographic characteristics of the participants. Characteristics

Value

Demographic characteristics (n = 15) Age (years)

49.7  7.5

Gender Male Female

6 9

Marriage Married

15

Employment status Working Sick leave Retired Housewives Unemployed

3 7 2 3 1

Education Elementary school Middle school High school College grad

1 0 6 8

Cancer type NSCLC SCLC

14 1

Stage Stage Stage Stage Stage Stage Stage

1(7%) 0(0%) 0(0%) 1(7%) 1(7%) 12(80%)

IA IIA IIB IIIA IIIB IV

Average period of CAM treatment (days)

241

Abbreviations: NSCLC: non-small cell lung cancer; SCLC: small cell lung cancer. Stage: staging of lung cancer was conducted under the TNM classification system. Information of cell type was collected from some of the participants.

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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Table 2 Treatment of the participants. Name KPSS Tumor type

Stage Period of CAM treatment

Type of CAM treatment

Current treatment

Reason for starting CAM treatment

o

CAM only (Western medical treatment completed) CAM and WM

o

CAM and WM

Recommended by acquaintances Recommended by acquaintance To alleviate pain

o

CAM and WM

o

CAM and WM

Experience of Western medical treatment

PA AT HM DBT Moxa Nega RT CT OP Others M48

85%

F52

90%

M45

90%

M61 F38

75– 80% 90%

F39

NSCLC (ADC) NSCLC (ADC) NSCLC (ADC) NSCLC

IA

145

o

IV

165

o

IV

336

o

o

o

o

IV

188

o

o

o

o

NSCLC

IIIB

123

o

o

o

90%

NSCLC

IIIA

258

o

o

o

F55a

80%

NSCLC

IV

526

o

o

o

F55b

60%

IV

182

o

o

o

o

o

M43 F45

90% 90%

NSCLC (ADC) NSCLC NSCLC

IV IV

242 147

o o

o

o o

o o

o

o

o o

o

CAM and WM CAM and WM

F47

90%

IV

316

o

o

o

o

o

o

o

o

CAM and WM

To alleviate side effect Recommended by acquaintances To alleviate side effect

F59

60%

IV

280

o

o

o

o

o

o

CAM and WM

To alleviate side effect

M44

90%

IV

89

o

o

o

o

o

o

o

M52

70%

IV

179

o

o

o

o

o

o

o

CAM only (Western medical treatment completed) CAM and WM

F63

60%

IV

435

o

o

o

o

o

o

o

CAM and WM

To enhance the level of immunity Considered incurable within conventional care To alleviate side effect

NSCLC (ADC) NSCLC (ADC) NSCLC NSCLC (ADC) SCLC

o

o

o

o

o

o

O o o

o

o

o

o

CAM only (Western medical treatment completed) CAM only

o

CAM and WM o

Considered incurable within conventional care Recommended by acquaintances To prevention relapse Conventional care failed to stop metastasis To alleviate side effect

Abbreviations: NSCLC: non-small cell lung cancer; SCLC: small cell lung cancer; PA: pharmacopuncture; AT: acupuncture; HM: Herbal medicine; DBT: distillation/breathe-intherapy; Moxa: moxibustion; Nega: cupping; RT: radiotherapy; CT: chemotherapy; OP: operation. Stage: Staging of lung cancer was conducted under the TNM classification system. Information of cell type was collected from some of the participants.

2.3. Data analysis Data analysis was performed on transcripts of the verbatim audio-recorded interviews, using techniques of the open coding method. Interviews were translated from Korean to English by an experienced professional translator and were reviewed by the principal investigator for accuracy.

Table 3 Semi-structured interview outline. 1) Tell me about your cancer and your course of treatment. 2) Tell me how your cancer has affected your quality of life. Tell me about the physical influence of your cancer. How does your cancer affect you emotionally? How does your cancer affect your social interaction and social roles? How does your cancer affect you financially? How does your cancer affect your thoughts about life and death? 3) Tell me about your experiences of CAM treatment. Tell me how you came to decide to take CAM treatment for your cancer. Tell me about your expectations of CAM. Explain the kinds of CAM treatment methods you are being given. Have they been effective? Have your expectations been met? 4) Tell me about the differences you feel after receiving CAM treatment. How has your perception of CAM changed after CAM treatment What is the biggest change in your life after receiving CAM treatment? 5) Tell me what you think separates CAM from contemporary medicine. Abbreviation: CAM: complementary and alternative medicine.

Data were collected and thematic coding was initiated by examining the responses. The NVivo10 for Windows software program was used for qualitative analysis. To effectively and vividly represent the lived experience of cancer patients, part I was analyzed using four dimensional categories of lifeworld experience suggested by van Manen [15]. After reading each transcript several times to identify sentences, phrases were identified. After a list of codes was developed, transcripts were reread and coded. Codes and tentative themes were grouped into subthemes, which were then grouped again into principle themes. Themes and responses were also compared across questions. Analyses were conducted by YK. 3. Results 3.1. Patients’ sociodemographic characteristics The main sociodemographic characteristics of the study patients (n = 15) are presented in Table 1. Patients’ sociodemographic characteristics, disease, and treatment information are summarized in Tables 1 and 2. 15 patients with a mean age of 49.7 years old (range 38–63) participated in the present study. 80% of patients were in stage IV and had had CAM treatment on average for 241 days. Patients’ quotations are given in italics in the following text. For effective understanding of the broad topics, the analysis was carried out in two separate parts, change in the quality of life of patients being treated for lung cancer and experience of Korean medical treatment. Under this double analysis, themes were identified, ‘loss of self’, ‘being the same as before’, and ‘revitalization’.

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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3.2. Part 1: change in quality of life during experience of lung cancer During the semi-structured interview, the framework of Ferrell et al. [14]. was used to include a multidimensional view of the quality of life, but the term ‘quality of life’ was not directly used. The completed interviews were analyzed under the four existential categories, ‘lived time’, ‘lived body’, ‘lived human relations’, and ‘lived space’ to interpret the life experience of lung cancer patients in depth. Van Manen has stated the four existential categories that are helpful in the investigation of the phenomenological meaning embedded in the life experience [15]. Fifteen interviews of lung cancer patients’ experience were analyzed as below:  ‘Lived time’ is divided into three phases; the time before diagnosis, the time after diagnosis, and the time after conventional treatment or surgery.  ‘Lived space’ indicates the scope of activities and environmental factors regarding participants’ treatment, for instance hospitals and their home.  ‘Lived body’ comprises the physical effect, psychological effect, and spiritual effect related to the development of symptoms, surgery and recovery.  ‘Lived human relations’ means the relationship between the participants and their families, friends or colleagues.

3.2.1. Lived time The experience of cancer patients largely differs in each phase, the time before diagnosis, the time after diagnosis, and the time after treatment or surgery. Even though their symptoms did not actually change immediately after diagnosis, the diagnosis itself was a substantial turning point with respect to the mental aspects and views on life. Physical symptoms did not change at this moment but some participants

judged that they could not keep their daily lives as before with the symptoms they currently had or felt they needed to quit their job to be treated. With despair, they limited their boundaries themselves. At the moment I first heard ‘cancer’, I avoided telephone calls or someone visiting me. I was afraid of meeting anybody. I asked my family to say “when someone calls me, tell him that I am not here” and I turned off my phones. I own my store and I naturally have many calls and meetings. But I became reluctant to confront them. I even didn’t want to go to gym. (F59) Otherwise, the aspect of ‘the time after treatment or surgery’ phase is different. After chemotherapy and surgery, new symptoms which are side effects emerge. For low vitality and changed appearance, they opt to reduce social activity and stay at home. As treatment proceeded, patients also suffered from economic burden from the leave of absence and medical expenses. (Fig. 1) I had to go to hospital so I necessarily resigned from the company. I wanted to keep working but I couldn’t. (M45) 3.2.2. Lived space Lived space has noticeably decreased according to the change in the phase of lived time. The cancer patients have lost their fields in which they used to work and have stayed only hospitals and their home after diagnosis. Nine out of 15 participants had been on leave of absence or had retired as a result of their cancer treatment (Table 1). Even though some participants tried to keep their job or continue housework, they either reduced the amount of work they did or their spouses took leave of absence. The changes in their appearance and humiliation as a result of cancer and its treatment made patients withdraw from society, which narrowed their range of activities. (Fig. 1) I sometimes answer the calls from colleagues and acquaintances. But I never meet them. (M43) The only problem I am concerned about is whether I should maintain something like working life or social networks. (M48)

Fig. 1. The change of lived space by lapse of lived time. Crucial points of lived time of cancer patients are the time before diagnosis, the time after diagnosis, and the time after treatment or surgery. Lived space fluctuates substantially with the change in the phase of lived time.

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3.2.3. Lived body The theme of ‘lived body’ showed the most conspicuous change. Physical effects, psychological effects, financial effects, and spiritual effects were identified as sub-themes. 3.2.3.1. Physical effect. Impairment in physical characteristics was one of the most distressing experiences for lung cancer patients. Most participants were suffering from several symptoms (e.g. respiratory symptoms, shoulder and back pain, fatigue, nausea, loss of appetite) and side effects (e.g. fatigue, nausea, loss of appetite, rash, alopecia, arthralgia, heat sensation, irritation) and they found it hard to perform their usual activities of daily living. These symptoms led participants to hospital before diagnosis and acted as subjective but the most important parameters of the severity of participants. They were often interested in their symptoms and physical condition rather than the results of the examination. Participants felt that “their own body was not what it used to be” and this changed their role from ‘caregiver’ to ‘care receiver’. Participants wanted to return to their workplace or previous role after recovery. 3.2.3.2. Psychological effect. Mostly, participants were addressing negative emotions, which were anxiety, depression, fear, stress, doubt, irritation, and non-acceptance. These were directly related to their diagnosis of cancer and the hardships resulting from bearing the symptoms and side effects. They reported that stress and anxiety derived from fear of death and relapse risk. One participant felt sorry that she had become an inconvenience to her family because she could not keep up with daily living. After the patients perceived cancer as the experience to recognize ‘self’, they surprisingly started to feel grateful and became optimistic. I felt grateful more often than when I was healthy. Uhm, I clung to school, church, housework, parenting but did not care my own life. During my 11-year-long work life, I have not noticed cherry blossoms and azalea blooming in the spring. Now I can enjoy the beauty of flowers. I think God have let me watch these things by giving me cancer. I appreciate everyday lives and I become happy by trivial things. It was like, painful cancer turned out to be a dear friend of mine. I mean, if only cancer didn’t bother me but stayed as a friend, I would be thankful for it as I could feel the importance of my husband and realize infinite support of my family. (F39) 3.2.3.3. Financial effect. Financial burden was frequently mentioned by the participants. One of the sub-themes was burden due to medical leave of absence. Cancer gave double burden that the patients were forced to leave the work place by cancer but also bore medical expense at the same time. Some participants were worried about continuous consumption of medical expenses with no income. In particular, the lung cancer patients under CAM treatment should plan for extra medical expenses. Those who had benefited suggested that CAM cancer treatment be covered by insurance, so that other patients could share the benefits. I don’t’ care much about having biomedical treatment because it is relatively low cost now. But, even though I want to have CAM treatment continuously, it is a big economic burden to me. So as to say, I hope CAM cancer treatment will be covered by insurance in the future, and become cheaper, so that CAM can be helpful to other people (F52). 3.2.3.4. Spiritual effect. Lung cancer has changed participants’ perspective of their lives. Most remarkable of all, participants

5

identified ‘self’ or focused on their own health after the experience of cancer. They put aside their ambition such as career progress or wealth or forgot the importance of their own health and their existence. They tried to look around themselves and spent more time for their interest till they were diagnosed as cancer. They felt gratitude towards cancer in that they started to think that “caring themselves is priority” and to appreciate their everyday life. I have put aside caring about myself and have lived life to the full, so this time I have got the opportunity to live one more time. I will live for me now (F45) 10.3 have lived for my family and have neglected myself. I just buried myself in nourishing children, earning money . . . and things like that. I mean, I haven’t looked after myself. But this time, I had the opportunity to look after myself. I was too careless with myself. So from now on, I will care myself, protect myself, and praise myself. I have been changed in that aspect. I think of myself first, rather than family (F47) In addition, some patients acquired deeper religious faith. However, some people became hopeless and lost their lifetime goal after they were diagnosed with cancer. 3.2.4. Lived human relations In particular, the social interaction with their acquaintances was usually related to their loss of confidence in their appearance or loss of self-esteem related to their dim prospects. Social interaction with acquaintances was relative to the physical and psychological status of the participants. They felt reluctant to meet other people due to their symptoms and fatigue, and even avoided making a phone call or being visited. Especially, visual appearances including a rash and alopecia induced shame and impeded participants from maintaining their social lives. M43 refused his previous relationships because he thought his illness was derived from society. In common, cancer patients narrowed their social circles to avoid being treated as patients. One participant asked her friends to pretend that she was healthy. If I could, I would just quit right now. Because I think that this disease has come from society. Firstly, I will quit my social relationships (M43). Contrary to that of acquaintances, the relationship with family worked as a guide during their treatment. In most cases, participants were introduced to CAM treatment by their family members with the wish for them to survive. In this respect, family was usually the driving force for patients to have treatment or for them to make new choices. Meanwhile, they find the cancer experience a chance to reconfirm the family bond. 3.3. Part 2. Experience of CAM treatment on lung cancer 3.3.1. Motives/expectations of CAM Participants were introduced to CAM treatment, usually by their family or acquaintances as an attempt to “clutch at straws”. Most participants in this study had advanced lung cancer so they suffered from severe side effects of anticancer agents or were told that there were no more possible treatment solutions. For this reason, their expectations of CAM focused on enhancing vitality and immunity and decreasing the side effects that had been endured with conventional cancer treatment. Some people needed hope and something or someone to rely on. For this reason, kind doctors and staff were another attraction to cancer patients. Conventional medical doctors just talk about symptoms, but CAM doctors ask us emotional distress. So I felt easy . . . (F38) I met good nurses and congenial doctors here. They were always concerned about me and it didn’t seem superficial. So I relied on them. Like a family. . . . . . . In the conventional medical hospital,

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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even though I paid additional fee to see the professor and waited for an hour, he just asked me short-answer questions. It sounded like ‘go out of a room in two minutes!’. Caring patients heartfully cures patients, right? (F39) 3.3.2. Effectiveness of CAM/expectations met Participants who benefitted from the CAM treatment were satisfied with both the physical and mental aspects. The crucial point to note is that participants found ‘psychological support’ as the distinct feature of CAM treatment compared with conventional medical treatment. While conventional medical doctors “only stick to the results of examinations”, “don’t explain well”, and “assume the worst by statistics”, treatment principles different from traditional Korean medicine and the kindness of Korean medical doctors worked as a “tower of strength” (Table 4). Strengthened vitality and reduced side effects of anticancer agents, as well as relieved symptoms, were considered the main reasons why lung cancer patients used CAM treatment as an adjunctive therapy. They perceived empowered vitality and they could keep up with their household affairs. Some participants visited conventional medical hospitals and it was confirmed that their tumors had quantitatively diminished. CAM treatment also gave hope for other possible solution to those who were judged to have no hope. However, there were some problems. One was suspicion regarding the precise effect of CAM treatment. Another was the expensive medical fee, thus it was a big burden for patients. The other was nondisclosure of CAM use to their conventional medical doctors. Conventional medical doctors are not typically welcoming of their patients having CAM, and sometimes, the use of CAM can cause tension in the doctor-patient relationship. However, this attitude induces patients to hide the fact that they are using CAM. For this reason, some participants did not inform their oncologist that they were using CAM. I have anticancer treatment in Japan . . . . . . I have my doctor in Osaka Metropolitan Hospital, and he is employed by the government. Japanese doctors are not pessimistic to CAM. I told them straight away that I have Korean medical treatment. For example, ‘I am Korean so I want to have Korean medical treatment. I want to be treated both ways’. And they said yes. They asked me only to inform them of the ingredients . . .


?When I see the patients here in Seoul, there are so many people who conceal their CAM history because Korean doctors categorically refuse it. I cannot understand it or forgive them. A patient’s health is the first priority (F63) 3.3.3. Change in the perception of CAM after treatment/perceived features of CAM compared with biomedicine Most participants were satisfied with the CAM treatment in that it helped patients who were exhausted from conventional

medicine to regain their health and psychological stability. Those who had no opinion or a negative view of CAM, changed their mind when an acceptable explanation was provided in trustworthy medical facilities “that don’t resemble a traditional Korean medical clinic” ‘by their own standards’. I didn’t have a good impression on Korean medicine before. It was not due to my personal experience but due to general perception that Korean medicine was expensive, it took long time, and its efficacy was vague. My sons knew it and they made appointment with doctor behind my back. . . . . . . It was explanation that changed my mind. They focused on immunity. I thought that the theory was possible, I mean, I yielded to this explanation. I started to trust them on this point. If they had given me acupuncture or moxibustion from the beginning, I wouldn’t have accepted it. They said they had carried experiment and they administered proven treatment to the patients. I yielded to this explanation.(M61) More than half of the participants had limited experience of Korean medicine as “Bo-yak”, restorative herbal medicine that boosts the potential for a cure. Experience of Korean medical cancer treatment “increased the possibility” to reuse CAM to some patients. Without perceivable efficacy, some participants were disappointed with the treatment. Those who were doubtful or neutral to CAM before treatment, became negative after treatment when they didnot have positive results. In the same vein, the participant who was in early stage (M48) and the participant who lasted a third of average treatment duration (M44) was not satisfied with CAM. Most patients noticed the differences in biomedicine and CAM treatment on cancer (Table 4). They said that both biomedicine and CAM have strengths and weaknesses, thus it will be better when they are performed together. Three key themes were ultimately identified, ‘loss of self’, ‘being the same as before’, and ‘revitalization’. 3.4.1. Loss of self Cancer patients perceive that they have lost their former ‘self’, who they used to be, and define themselves as abnormal. They suffer from severe symptoms and treatment side effects, but also from the psychological burden and stigma of cancer. The fact that this (cancer) is always suspended on me was greatly distressing. (F52) I lived as I wanted. I liked my work. I liked drinking. But now I am restricted. I cannot eat what I want so I cried a lot at the first time. . . . . . . The doctor referred me to a psychiatrist. The psychiatrist said “You can overcome and accept this. You have almost accepted this but your heart hasn't yet”. (F45) After cancer diagnosis, my aim of life became uncertain. I am worried about what to do now. I have to survive first so I haven't think about what to do next after survival from cancer. What can I say now? My life is in danger. (M44)

Table 4 Perceived feature of CAM compared with conventional medicine. CAM

Conventional medicine

Focuses on the whole body condition, cure the root cause Slow effect Mild approach Establishing the basis for the struggle against cancer Gentle and less painful Sympathetic and ‘family’ kind of staff Expensive Everybody has a different effect Better for Koreans/Asians Complementing

Focuses only on cancer and the results of examination Immediate effect Aggressive approach Only good for the human body Toxic and agonizing Not kind Covered by insurance Stick to manuals Scientific –

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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As a consequence, they could not keep up with general life due to a deteriorated vitality. They avoided meeting people in order to hide their changed appearances, and even felt sorry for giving trouble to other family members. The influences were substantially associated with ‘loss of self’. I work as a sales rep so I should meet people frequently. As my vocal cord is paralyzed, I had problem in communication and my pride has been hurt when people see me with pitying eyes. (M61) Ironically, patients decided to take care of themselves as a result of cancer. More than half of the participants said that they will spend more time on themselves now after diagnosis of lung cancer as seen in analysis ‘ lived body’. 3.4.2. Being the same as before Cancer treatment is a constant battle to recover the former ‘self’. Judging from interviews, participants thought ‘being the same as before’ is the most important factor in treatment. When they were asked what they hoped for after they are completely cured, participants wanted to “get back” to the work place or daily living. Cancer patients were not familiar with feelings of deceased autonomy and found it hard to adopt a changed role from ‘caregiver’ to ‘care receiver’. They want to avoid being subjects of pity in relationships, and not being in work places or houses, but it is an inevitable choice. Cancer patients cannot help but lose their own ‘self’ due to serious illnesses and narrow lived space down (Fig. 1), and they struggle to restore their lived space, lived body and lived relations. Even though I may work to death, I decided not to spare myself but to do what I want. I am on sick leave for a year, but I want to go to work if I want move like this. (F52) When they can “climb a mountain without dyspnea” and “live like normal people”, lung cancer patients regard these signs as a parameter of recovery. The change was, um, I hardly breathed that I could not walk even five steps, but now I can climb the mountain. This fact makes me really satisfied. (F59) 3.4.3. Revitalization A key theme of the participants’ CAM experience was ‘revitalization’. Participants thought that both lung cancer and conventional medicine had worsened their stamina. When they are able to live with fewer perceived symptoms, to have less fatigue after anticancer treatment, and to look like an ‘ordinary’ person owing to CAM, cancer patients ascribe revitalization to CAM. This complementary feature is distinctive of CAM and became one of the reasons people tried CAM. I had difficulty in eating but didn't have nausea or vomiting. And three days after injection I feel sluggish and dull. This feeling lasts seven days. However, when I had CAM treatment simultaneously, I rather felt invigorated. (F52) Other patient who was next to me in the hospital room told me that I had strong stamina probably owing to CAM treatment. I think I had better immunity than other patients. (F39) In addition, participants were attracted by the kindness of staff and the doctors’ attention to their whole body condition. This tendency partly results from the characteristics of CAM that doctors observe the condition of the whole body rather than the lesion itself. This principle made patients feel “treated like an important person” but not a patient, and this helped them put aside the thought of ‘loss of self’ and they were able to revitalize. Interpersonal support is an important factor in the QoL of cancer patients.

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4. Discussion The present study consisted of in-depth semi-structured interviews with cancer patients who received CAM treatment, in order to understand their quality of life and expectations. As quantitative outcome measurements are insufficient to reflect the outcomes of an intervention, a qualitative method can be an appropriate way to investigate how patients really perceive the treatment [16]. There has been much controversy over effect of CAM on survival of the cancer patients [17–19]. However, despite the lack of clarity on whether CAM helped, approximately half of cancer patients are using CAM [20,21] Research on the efficacy of CAM in cancer should be conducted. Acupuncture is a complementary therapy that has been shown to improve chemotherapy-related symptoms such as nausea and vomiting, and also has benefits in pain control [22,23]. Some herbal medicines have been shown to have positive effects on cancer patients [24,25]. The reasons why participants had chosen CAM were similar to previous studies on CAM treatment for cancer. Almost 50% of patients reported that they used CAM to improve their quality of life and to lessen the side effects of biomedical anticancer treatment [26,27]. In several studies, many patients gave the answer that they were using CAM in the hope of a cure and to prevent reoccurrence [26,28–31]. ‘Loss of self’ is the concept suggested by Charmaz that chronically ill individuals suffer from due to leading restricted lives, experiencing social isolation, being discredited and burdening others [32]. This experience is common in cancer patients. When the decisive aspect of ‘self’ vanished, the QoL of cancer patients declined significantly. Reduction in sexual function was a major concern for younger cancer patients [33], and masculine self-image was a meaningful dimension of QoL in men with prostate cancer [5]. Hair loss was one of the most concerning side effects in diverse cancer types [7,34–36]. On the other hand, as they go through the process of treatment, patients became aware of themselves. In Korea, many people relinquish their own life to their role in the workplace and family. In a study investigating the differences between US-born and foreign-born Chinese breast cancer survivors, traditional Chinese women shift their focus from others to themselves and re-examine their life and their priorities [37]. Considering a similar cultural background, this may be prominent in Koreans who have sacrificed their own health for others, and who realize the importance of selfcare and how this is not a selfish act after diagnosis. The reason why Korean lung cancer patients used CAM was different from previous qualitative studies on Chinese cancer patients' use of traditional Chinese medicine. They found that Chinese cancer patients used traditional Chinese medicine because it is safe and cheap and Chinese people had better understanding on traditional Chinese medicine [38,39]. However, in this study, Koreans used CAM in spite of its cost. Ten participants started using CAM on the recommendation of acquaintances despite their skeptical attitudes and limited knowledge about CAM (e.g. Bo-yak). These controversial findings suggest that there are other drivers for using CAM. Perceived control over the battle against cancer is one of the main reasons for using CAM in that they felt that they could live ‘the same as before’ and they were of full vitality after harsh biomedical anticancer treatment. Participants have exploited CAM as one of their expedients to expand and recover the diminished lived space. This concept was stated as an increased QoL among cancer patients during mistletoe therapy, which increased vitality and autonomy and were associated with emotional functioning and role performance [4].

Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014

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Lung cancer appears to have a relationship with stress. There is some epidemiological evidence that generalized anxiety disorder increases male lung cancer incidence at a ratio of 1.77(CI:1.33– 2.30) [40] and distress has induced the death of lung cancer patients [41]. A meta-analysis of studies between 1966 and 2007, the stress-related psychosocial factors such as stressful life experiences, personality, and coping style induced a higher cancer incidence, poorer survival, and higher mortality [42]. In this study, the occurrence of lung and breast cancer had a higher association with stress than other cancer types. Several research papers have reported similar consequences on other cancer types. Job strain and generalized anxiety disorder are likely to have a negative effect on esophageal adenocarcinoma and squamous-cell carcinoma [43]. Considering these results, CAM can be another approach to adjunctive therapy to other cancer patients, as well as their quality of life. All the participants had the experience of using both biomedical anticancer treatment and CAM at the same time and 11 were having both at the time of interview. Most participants regarded CAM as good complement. 13 respondents wanted to continue CAM treatment and hoped that more patients could have integrative treatment in the future. In another qualitative study, cancer patients usually experienced CAM and biomedicine as separate, unmixable entities, and patients who experienced an integrated form of both treatments had a very positive view [13]. To promote compliance to cancer conventional therapy, CAM use can be an effective approach [6]. Although the use of CAM for cancer is increasing, a systematic review revealed that 20–77% of CAM users had informed their oncologist [44]. This communication gap can impede a patients' chance to obtain CAM as well as prevent potential harm. As long as reasonable evidence regarding the interaction between multiple treatments is offered, integrative treatment can be helpful to lung cancer patients. 4.1. Limitations This study has some limitations. These results realted to a small group of lung cancer patients and may not be generalizable to other types of cancer. For cancers with better survival rates, the results may differ. The survival rate of these participants is unknown, which is an important outcome measure in cancer research [8]. As there was limited clinical information available to the researchers on the various stages and cancer type, discussion may offer insufficient understanding. Even though participants in the early stage (IA) reported to have no effect, it was difficult to ascertain the relationship among the stages, and the QoL change after treatment. Furthermore, the multi-dimensional nature of the QoL assessment raises some problems regarding interpretation, thus the interviews and analysis have limitations [45]. The social context of traditional medicine in treatment in Korea differs substantially from that in other countries, which means that a generalized explanation may not be applicable to other populations. The definition of CAM used in this study mainly focused on pharmacopuncture, acupuncture, and herbal medicine including herbal extract in various formulas because the main form of CAM in Korea was Korean medicine. It is hard to directly generalize CAM in the broad sense, such as prayers, vitamins but the consistency with previous studies about different types of CAM on diverse cancer types should be considered. 5. Conclusion CAM works as not only medical treatment but also gives mental support in terms of belief. While cancer patients go through a variety of changes, CAM potentially improves multiple dimensions

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Please cite this article in press as: Y. Kim, et al., Use of complementary and alternative medicine by lung cancer patients in Korea: A qualitative study, Eur. J. Integr. Med. (2016), http://dx.doi.org/10.1016/j.eujim.2015.12.014