You are on page 1of 10

Support Care Cancer (2011) 19:17431751 DOI 10.

1007/s00520-010-1014-7

ORIGINAL ARTICLE

Symptoms, psychological distress, and supportive care needs in lung cancer patients
Yu-Chien Liao & Wei-Yu Liao & Shiow-Ching Shun & Chong-Jen Yu & Pan-Chyr Yang & Yeur-Hur Lai

Received: 15 April 2010 / Accepted: 20 September 2010 / Published online: 15 October 2010 # Springer-Verlag 2010

Abstract Purpose The purpose of this study was to examine the level of symptoms, psychological distress, and supportive care needs and factors related to five unmet need domains in lung cancer patients. Methods A cross-sectional study of 152 lung cancer patients at a medical center in Taiwan assessed their symptoms, psychological distress, and unmet supportive needs in five major care domains. Logistic regression was applied to examine the related factors of unmet supportive care needs. Results In general, patients had mild-to-moderate levels of symptoms and high prevalence of psychological distress. Regardless of their treatment status, they reported high levels of supportive care needs. The top three need domains were: (1) health system and information, (2) psychological, and (3) patient care and support. Levels of symptoms, anxiety, and depression were the most significant factors in unmet supportive care needs.
Y.-C. Liao : S.-C. Shun : Y.-H. Lai (*) Department of Nursing, College of Medicine, National Taiwan University, 1 Jen-Ai Rd., Sec. 1, Taipei 100, Taiwan e-mail: laiyhwk@ntu.edu.tw Y.-C. Liao Department of Nursing, Yuanpei University, Hsinchu, Taiwan W.-Y. Liao : C.-J. Yu : P.-C. Yang Department of Internal Medicine, National Taiwan University Hospital and National Taiwan University College of Medicine, 1 Jen-Ai Rd., Sec. 1, Taipei 100, Taiwan

Conclusion The effect of symptoms and psychological distress on unmet supportive care needs is substantial. Therefore, a systematic assessment of patients distress and care needs is important for clinical lung cancer care. Further intervention consisting of symptom management, continuing counseling, and preparation for transition from active treatment to the follow-up stages are essential in improving quality of care. Keywords Lung cancer . Need . Symptom . Psychological distress

Introduction Lung cancer is one of the most life-threatening diseases and leading causes of cancer deaths worldwide [1]. Previous reports have shown that most lung cancer patients are diagnosed at an advanced stage [2] and generally undergo complex treatments (e.g., chemotherapy (CT), radiotherapy (RT), epidermal growth factor receptor tyrosine kinase inhibitor (EGFR-TKI), or combined modalities) [3]. The impact of aggressive treatment may cause different levels of physical and psychological distress [4, 5] and lead to different care needs [6, 7]. In addition, the transition from an active treatment stage to a follow-up could induce special needs for patients [6, 8]. Previous research noted that more than 80% of lung cancer patients have multiple symptoms [5, 9, 10] as well as more symptoms and psychological distress than do patients suffering from other cancer types [11, 12]. Studies showed that, among various types of psychological distress, depression, and anxiety are especially common with 23% to 47% of lung cancer patients experiencing these problems at some point in their illness [4, 12].

1744

Support Care Cancer (2011) 19:17431751

According to symptom management theories [13, 14], patients responses to a symptom are multi-dimensional. These responses include physical decline, psychological distress, and other sociocultural and behavioral changes. Furthermore, unsolved symptoms and their resultant emotional response (e.g., anxiety and depression) and cognitive evaluation could cause the patient to transform an unpleasant sensation into action. This can increase their need to seek help from health care professionals. Similarly, empirical studies also show that supportive cancer care needs are related to factors, such as disease/ treatment [1519], and important demographic factors [16 20]. Patients in a more advanced cancer stage, with a shorter time since their diagnosis, and who are undergoing treatments may experience more impact from different symptoms or side effects and may develop different care needs [1319]. Varying individual backgrounds (age, gender, and education) may result in different ways of coping or responding to symptoms and help-seeking behavior [13, 14, 16, 18, 19, 21, 22] and cause different supportive care needs [15]. However, these factors have not been simultaneously examined in a lung cancer population, thus more study is needed to understand how these factors are related to needs of lung cancer patients. Numerous studies examined the supportive care needs of cancer patients [7, 15, 16, 20, 23, 24] and revealed that lung cancer patients had higher unmet supportive care needs than did other cancer patients [16, 25]. However, few studies focused on ways in which to meet those needs [17, 25, 26]. Little information exists concerning the distress of lung cancer patients, and their supportive care needs during active medical treatment or in the follow-up stage. In Taiwan, it is particularly crucial to explore the distress and supportive care needs in lung cancer patients because it accounts for nearly 20% of the annual cancer-related deaths [27]. There is also a trend toward shorter hospital stays and increased treatment in outpatient settings due to costsavings and insurance policies, which may create additional unresolved distress and greater supportive care needs during the treatment stage. Unfortunately, little information is available regarding the most efficient ways to meet the supportive care needs of lung cancer patients. To bridge the gap between the supportive care given by the clinical service and the unmet needs perceived by the patients during the treatment and follow-up stages, this study aimed to: (1) examine the level of symptoms, psychological distress, and supportive care needs across groups with different treatment status, and (2) examine the relationship between various supportive care needs and symptom levels, psychological distress, selected demographic factors, and treatment variables. According to symptom management theories [13, 14] and past research, we hypothesized that the unmet supportive care needs of

lung cancer patients would relate to their levels of symptoms, their psychological distress, and their treatment status. We also hypothesized that demographic and diseaserelated factors would affect their need for supportive care. The findings could provide the basis of an improved supportive care model to serve the specific needs of lung cancer patients.

Methods Participants and procedure After obtaining Institutional Review Board approval, we conducted a cross-sectional survey of adult lung cancer patients that were either actively undergoing cancer treatment or in the follow-up stages following treatment. For the purpose of this study, we excluded very ill patients and those with terminal lung cancer receiving palliative care. The research team identified and enrolled eligible patients when they visited either the Outpatient Clinic or the Chest/Oncology Inpatient Unit at a medical center in northern Taiwan. After understanding the purpose and procedures of the study, patients who agreed to participate signed a written consent form. Face-to-face interviews with the patients provided data for the study. Measures Symptom Severity Scale We used the 21-item Symptom Severity Scale (SSS) developed by the corresponding author [28] to assess the patients symptom severity. The scale contains the 21 most common symptoms, such as fatigue, pain, and poor appetite, which occur during treatment of lung cancer. The SSS is a 0 to 10 numerical rating scale listing specific symptoms in cancer patients within the past 7 days, with 0 indicating no symptoms at all and 10 indicating as severe as I can imagine. The higher the score, the more severe the symptoms. Cronbachs alpha in the present study was 0.87. Hospital Anxiety and Depression Scale To assess depression and anxiety in patients, we used the Chinese version of Hospital Anxiety and Depression Scale (HADS) [29]. The widely used 2-subscale, 14-item HADS, Chinese version, has been a valid assessment for depression and anxiety in Taiwanese cancer patients [30]. Each item is scored from 0 (not at all) to 3 (always) with a subscale score from 0 to 21. The higher the score, the greater the level of anxiety and depression. The ranges of score for

Support Care Cancer (2011) 19:17431751

1745

non-cases, borderline cases, and clinical cases were 07, 8 10, and 1121, respectively [29]. Cronbachs alpha values in this study were 0.73 and 0.83 for the anxiety and depression subscales, respectively. Cancer Needs QuestionnaireShort Form 32 We used the Chinese version of the Cancer Needs Questionnaire (CNQ)Short Form 32 developed by Foot (1996) [31, 32] to assess patient needs. The questionnaire is composed of five needs domains (subscales), including: (1) health system/information (e.g., to be fully informed about cancer remission, to be fully informed about the odds of treatment success); (2) psychological (e.g., dealing with feeling down or depressed, coping with fears about the pain and suffering you might experience); (3) physical and daily living care (e.g., dealing with lack of energy and tiredness, coping with keeping up with work around the home); (4) patient care and support (e.g., for cancer specialist, show sensitivity to your feelings and emotional needs; for nurses, to attend promptly to patients physical needs in hospital); and (5) interpersonal communication (e.g., coping with changes in other peoples attitudes and behavior towards you, coping with awkwardness in talking with others about the cancer). The CNQ is a 5-point scale instrument. The summated scores of each subscale are further converted into standardized scores, ranging from 0 to 100 with higher scores representing greater unmet needs [31]. The CNQs psychometric properties have been established [16, 19, 31, 32]. In the current study, Cronbachs alpha values were between 0.83 and 0.95 in the five subscales. Background information This included demographic characteristics, such as age, gender, education, marital status, employment status, religious affiliation, and caregivers. It also contained disease and treatment related factors, such as cancer stage, cancer type, treatment status, and Karnofskys Performance Status (KPS) [33]. Data analysis Descriptive statistics were used to analyze the demographic data, levels of distress, and patient needs. Analysis of variance (ANOVA) with post hoc comparison and Chisquare with Fishers exact test were conducted to compare the differences in symptom severity, psychological distress, and needs among treatment subgroups. To identify the factors associated with each care domain, we developed five logistic regression models representing the five needs domains. Patient data were categorized as no need and some needs for each item [7, 34, 35]. No need included

1 (no need) and 2 (needs already satisfied), while some need indicated scores higher than 2 (low needs, moderate needs, or high needs). The independent variables included gender, age, recruitment site (outpatient or inpatient), types of treatments (CT, CT+RT, EGFR-TKI, or follow-up), cancer stage (early and advanced stage), months since diagnosis, educational level, performance status (KPS), overall symptom level (mean of 21 symptom levels), and depression and anxiety scores.

Results Subject characteristics Of 188 eligible patients, 152 subjects agreed to participate in the study (response rate: 81.3%). Thirty-two patients refused to take part in the study, and four failed to complete the interview due to feeling unwell. Two thirds of the subjects (69.1%) came from the outpatient clinics (Table 1). There were slightly more male patients (52.6%) than there were female patients with the mean age of all subjects 60.2 (SD=11.0). Two thirds of the subjects had an educational level of high school or higher. The majority diagnosis of the subjects was non-small cell lung cancer (NSCLC) (87.5%). Close to half of the subjects were receiving CT (45.4%) and 21.7% had EGFRTKI while they were involved in the study. Sixteen percent of the subjects completed their treatment and were in follow-up care. Patients had a wide range of performance status with a KPS of 68.8 (SD = 10.1). The patients receiving CT+RT had lower KPS scores (M =63.2, SD= 9.5) than the patients in EGFR-TKI (M =70.9, SD=9.5) or the follow-up groups (M =75.2, SD=8.2). The patients receiving CT (M =67.4, SD=9.9) had poorer KPS score than the follow-up patients (F =7.72, p =0.000). Symptom experience Patients averaged 10.4 (SD=5.0) different kinds of symptoms with a relatively wide range (7.8 to 13.2) across the four treatment subgroups. Most patients experienced mildto-moderate levels of symptom severity (M =2.0, SD=1.4). The five symptoms reported as most severe were, in order, fatigue, weakness, insomnia, cough, and alopecia. Regarding the differences among treatment subgroups, patients receiving CT perceived more symptoms and higher level of symptom severity than did the follow-up group, while the CT+RT group had higher symptom severity and more symptoms than the EGFR-TKI and follow-up groups. Twelve of the 21 symptoms had significantly different mean levels among treatment subgroups. As Table 2 shows, the major differences occurred between the follow-up group

1746 Table 1 Demographic information and disease-related characteristics (N =152)


Variable Gender Male Female Age (years) Education level (years) Illiterate Elementary school Junior high school Senior high school College and higher Marital status No Yes Religion Buddhist/Taoist Christian None Living with family Yes No Employment Employed Unemployed Histology type NSCLC SCLC Cancer stage NSCLC stage IIIa NSCLC stage IIIb NSCLC stage IV SCLC limited SCLC extensive Setting Outpatient Clinics Inpatient wards Length since diagnosed (months) Current treatment Chemotherapy only EGFR-TKI therapy Follow-up CT+RT RT sites* Brain Bone Thoracic Karnofsky Performance Status 50 60 70 80 90 68.8 (10.1) 17 32 61 37 5 11.2 21.1 40.1 24.3 3.3 69 33 25 25 13 6 11 45.4 21.7 16.4 16.4 15.1 (13.3) 105 47 69.1 30.9 16 26 91 7 12 10.5 17.1 59.9 4.6 7.9 133 19 87.5 12.5 43 109 28.3 71.7 139 13 91.4 8.6 112 11 29 73.7 7.2 19.1 35 117 23.0 77.0 60.2 (11.0) 11.0 (4.5) 6 38 19 38 51 4.0 25.0 12.5 25.0 33.5 80 72 52.6 47.4 Mean (SD) n Percentage

Support Care Cancer (2011) 19:17431751

and the CT or CT+RT groups. For instance, patients receiving CT had higher levels of fatigue, weakness, and nausea than did the follow-up patients. Patients in CT+RT group had greater levels of weakness, dry mouth, poor appetite, drowsy, distraction, and vomiting compared to the follow-up patients. Psychological distress The mean scores for depression and anxiety of all subjects were 7.4 (SD = 4.2) and 5.6 (SD = 4.0), respectively. According to the HADS classification, 25.7% and 14.5% of the participants were classified as clinical depression or anxiety cases, and 15.1% and 21.1% were identified as borderline depression or anxiety cases, respectively. The ANOVA and Chi-square with Fishers exact test showed no significant difference in the mean scores of depression and anxiety nor in the percentage of clinically depressed cases among treatment subgroups (see Table 3). Correlation between symptom severity and psychological distress Significant relationships existed between overall symptom levels and depression (r =0.55, p <0.001) and anxiety (r =0.42, p <0.001). For individual symptoms, depression significantly correlated with the all top five symptoms, including fatigue (r =0.42, p <0.000), weakness (r =0.48, p <0.000), insomnia (r =0.27, p <0.001), cough (r =0.25, p <0.002), and alopecia (r =0.25, p <0.002). Anxiety significantly correlated with fatigue (r =0.31, p <0.000), weakness (r =0.27, p <0.001), and insomnia (r =0.36, p <0.001). Supportive care needs The overall unmet supportive care need score was 43.7 (SD=20.0) with the needs in the five sub-domains ranging from 18.7 (SD=26.6) to 67.9 (SD=27.5) on a 100-point scale (Table 4). The three highest recognized need domains were health system/information needs (M =67.9, SD=27.5), psychological needs (M =41.9, SD=24.4), and patient care and support needs (M =41.1, SD=23.1). Interpersonal communication needs ranked as least important. There was no significant difference in any need domain across different treatments. In additional analysis on the prevalence of moderate-to-high unmet need items, approximately two thirds of the subjects reported moderate-to-high unmet health system/information needs concerning things helping self get well (65.8%), cancer remission (63.8%), benefit and side-effects of treatment (63.8%), and test results as soon as possible (62.5%). Moreover, dealing with fears about disease spreading and return (40.2%), doctor acknowledges and shows sensitivity to your feel-

* Five patients received two sites of RT

Support Care Cancer (2011) 19:17431751 Table 2 Symptom number and severity by different treatment subgroups in last week (N =152)
Overall (N =152) CT (n =69) M (SD) 11.0 (4.8) 2.1 (1.4) 4.3 (2.8) 3.4 (2.8) 3.0 (3.3) 2.5 (2.7) 2.6 (2.4) 2.5 (2.9) 2.9 (3.0) 2.8 (3.0) 2.6 (3.0) 2.1 (2.5) 2.1 (2.8) 2.2 (2.6) 2.0 (2.3) 1.7 (2.8) 1.4 (2.5) 1.9 (2.7) 1.0 (1.9) 1.4 (2.5) 0.9 (2.0) 1.3 (2.5) 0.8 (2.0) CT+RT (n =25) M (SD) 13.2 (4.6) 2.7 (1.4) 4.0 (2.9) 3.7 (2.7) 2.4 (2.6) 3.2 (2.8) 5.4 (3.9) 3.4 (3.0) 3.1 (2.7) 2.3 (2.3) 4.5 (3.2) 3.2 (2.7) 3.2 (3.5) 2.6 (2.8) 2.0 (2.3) 2.4 (2.6) 1.9 (2.4) 2.3 (3.1) 2.2 (3.1) 1.9 (2.4) 0.4 (0.8) 1.6 (2.8) 1.1 (2.3) EGFR-TKI (n =33) M (SD) 8.9 (4.5) 1.6 (1.2) 3.2 (2.2) 2.2 (2.5) 2.3 (2.6) 1.9 (2.1) 1.4 (2.7) 2.2 (2.2) 2.3 (2.5) 1.9 (2.7) 1.4 (2.4) 1.7 (2.6) 1.8 (2.5) 1.0 (1.8) 1.3 (2.0) 1.2 (2.1) 1.9 (3.1) 0.5 (1.8) 1.5 (2.3) 0.8 (1.9) 1.9 (2.5) 0.3 (1.4) 0.3 (2.7) Follow-up (n =25) M (SD) 7.8 (5.2) 1.1 (0.9) 2.4 (2.3) 1.8 (2.0) 3.1 (3.1) 1.8 (1.9) 0.7 (1.5) 1.2 (2.5) 1.2 (2.0) 1.8 (2.3) 0.8 (1.5) 1.2 (1.7) 0.7 (1.4) 1.6 (2.0) 1.1 (1.7) 0.9 (1.4) 1.8 (2.4) 0.3 (1.0) 0.5 (1.2) 0.3 (1.2) 0.4 (1.5) 0.1 (0.6) 0.3 (1.0) 7.91* 7.30* 3.39** 3.93*** 0.67 2.46 11.35* 3.33** 2.22 1.18 9.33* 2.95** 3.60** 2.91** 1.70 1.76 0.46 5.66*** 3.20** 2.56 3.64*** 3.73*** 1.10 > > , > > > , > > > > , , > F test Post hoc

1747

M (SD) Symptom number Overall symptom level Fatigue Weakness Insomnia Cough Alopecia Dry mouth Pain Dyspnea Poor appetite Drowsy Appearance alteration Distraction Chest tightness Weight lose Numbness Nausea Skin darkness Constipation Diarrhea Vomiting Muconitis 10.4 (5.0) 2.0 (1.4) 3.7 (2.7) 3.0 (2.7) 2.8 (3.0) 2.6 (2.6) 2.5 (3.4) 2.4 (2.5) 2.3 (2.9) 2.3 (2.9) 2.3 (2.7) 2.0 (2.5) 2.0 (2.7) 1.9 (2.4) 1.7 (2.6) 1.6 (2.5) 1.6 (2.6) 1.4 (2.5) 1.2 (2.2) 1.2 (2.3) 1.0 (2.0) 0.9 (2.2) 0.9 (2.2)

> ; > , > ; > , > , >

Ranking order as mean scores


*

p <0.001,

**

p <0.05,

***

p <0.01

ings and emotional needs (39.5%), and dealing with lack of energy and tiredness (28.3%) ranked highest as moderate-to-high unmet needs of psychological, patient care and support, and physical and daily living domains, respectively.

Factors related to unmet supportive care needs Five logistic regressions were performed to identify the significant predictors of the reported unmet care need in the five domains. Overall, higher anxiety was found to be

Table 3 Psychological distress by different treatment subgroups in last week (N =152)


Total sample (N =152) M (SD) Depression Clinical case Borderline Not case Anxiety Clinical case Borderline Not case 5.6 (4.0) 22 (14.5) 32 (21.1) 98 (64.4) 7.4 (4.2) 39 (25.7) 23 (15.1) 90 (59.2) 5.8 (4.1) 11 (15.9) 13 (18.9) 45 (65.2) n (%) CT (n =69) M (SD) 7.7 (4.1) 18 (26.1) 14 (20.3) 37 (53.6) 5.3 (4.1) 4 (16.0) 7 (28.0) 14 (56.0) n (%) CT+RT (n =25) M (SD) 8.7 (4.6) 7 (28.0) 5 (20.0) 13 (52.0) 4.3 (4.2) 4 (12.1) 5 (15.2) 24 (72.7) n (%) EGFR-TKI (n =33) M (SD) 6.8 (4.2) 8 (24.2) 3 (9.1) 22 (66.7) 5.3 (4.0) 3 (12.0) 7 (28.0) 15 (60.0) n (%) Follow-up (n =25) M (SD) 6.0 (3.8) 6 (24.0) 1 (4.0) 18 (72.0) F =1.20, p =0.31 Fishers exact=3.03 p =0.82 n (%) F =1.98, p =0.12 Fishers exact=6.08 p =0.41 F/Fishers exact (p)

1748 Table 4 Supportive care needs across subgroup by treatment (N =152)


Supportive care needs domains Overall M (SD) Health system/Information Psychological Patient care support Daily living care Interpersonal communication Overall supportive care 67.9 (27.5) 41.9 (24.4) 41.1 (23.1) 28.3 (22.6) 18.7 (26.6) 43.7 (20.0) CT (n =69) M (SD) 68.1 (28.1) 43.8 (23.3) 41.5 (21.2) 29.7 (22.5) 20.0 (26.3) 45.1 (20.0) CT+RT (n =25) M (SD) 61.6 (28.3) 40.9 (25.8) 39.5 (26.9) 30.0 (25.3) 27.5 (27.7) 42.3 (22.4)

Support Care Cancer (2011) 19:17431751

EGFR-TKI (n =33) M (SD) 70.2 (27.4) 40.0 (25.3) 42.7 (23.9) 25.0 (23.3) 17.4 (27.4) 42.9 (20.7)

Follow-up (n =25) M (SD) 69.6 (24.9) 40.5 (23.5) 39.8 (22.5) 27.2 (19.5) 8.0 (16.5) 42.2 (17.0)

F (p)

0.55 (0.12) 0.24 (0.87) 0.12 (0.94) 2.56 (0.06) 0.39 (0.76) 0.22 (0.89)

significantly related to each of the five domains of unmet need. Higher level of overall symptoms was found to be related to three domains of unmet needs in health system/ information, psychological, physical, and daily care. Age was related to psychological needs with younger patients reporting higher psychological needs. More depressed patients had fewer unmet health system/information needs but reported more unmet psychological needs. Patients with higher levels of education were more likely to express unmet needs in physical and daily care (Table 5). Gender, treatment, time since diagnosis, recruitment site, and disease stage had no significant relationship to any domains of unmet needs.

Discussion This study simultaneously explored the symptoms, psychological distress, supportive care needs, and the factors related to those needs of lung cancer patients. The results supported the hypothesis that the levels of physical symptoms and psychological distress were significantly related to unmet supportive care needs. However, there was no significant difference in needs across treatment subgroups in this study. The results have important clinical implications for understanding the distress of lung cancer patients and their supportive care needs during active treatment and follow-up stages.

Table 5 Significant factors related to needs in each domain by logistic regression (N =152)

Needs domains and related factors

Beta

SE

(Wald test/p)

Odds ratio (95%CI)

Health system/Information (Chi-square=25.21, p =0.022, Nagelkerke R square=0.31) Anxiety 0.24 0.12 3.90/0.048 1.27 (1.021.59) Depression 0.40 0.14 7.78/0.005 0.67 (0.510.89) Overall symptom level 0.85 0.29 8.50/0.003 2.39 (1.344.29)

Psychological needs (Chi-square=65.98, p =0.000, Nagelkerke R square=0.52) Age 0.07 0.02 6.40/0.011 Anxiety 0.20 0.09 4.95/0.026 Depression 0.22 0.09 5.76/0.020 Overall symptom level 0.63 0.22 8.08/0.004

0.93 (0.890.99) 1.22 (1.021.44) 1.26 (1.151.57) 1.89 (1.222.90)

Patient care and support needs (Chi-square=24.79, p =0.025, Nagelkerke R square=0.21) Anxiety 0.20 0.07 9.79/0.002 1.22 (1.081.39) Input independent variable: age, gender, education (year), month since diagnosed, recruitment site (inpatient or outpatient), performance status (KPS), Overall symptoms level, depression, anxiety (numbered scores), stage (early or advanced), treatment (CT, CT+RT, EGFR-TKI, follow-up) Physical and daily living care needs (Chi-square=58.36, p =0.000, Nagelkerke R square=0.43) Overall symptom level 0.58 0.22 6.65/0.010 1.78 (1.152.76) Anxiety 0.17 0.07 6.52/0.011 1.19 (1.041.35) Performance status 0.07 0.03 4.95/0.026 0.94 (0.890.98) Education (year) 0.10 0.05 5.34/0.021 1.14 (1.021.26) Interpersonal communication needs (Chi-square=20.09, p =0.044, Nagelkerke R square=0.19) Anxiety 0.15 0.06 5.50/0.019 1.16 (1.031.32)

Support Care Cancer (2011) 19:17431751

1749

Similar to previous studies [5, 9, 10], patients in this study reported multiple symptoms. Although the overall symptom level was mild-to-moderate, there were significant differences across treatment subgroups. Patients that received CT only or CT+RT concurrently experienced significantly higher levels of symptom severity and numbers of symptoms than the EGFR-TKI and follow-up groups. Attribution of the differences might be to the side effects of the chemotherapy and poor performance. Dodd et al. (2001) asserted that symptoms could cause declines in physical functioning and, in turn, functioning declines might accentuate the symptoms [13]. Fatigue remained the symptom causing the greatest distress, as reported in previous research [5, 9, 10]. This suggests that helping lung cancer patients effectively manage fatigue should be a priority in clinical care, particularly for those undergoing treatment. Our patients reported high depression and anxiety morbidity with 40.8% and 35.6% of them categorized as clinical or borderline cases, respectively. Furthermore, the levels of depression and anxiety correlated with the levels of most severe symptoms. Compared to previous studies [12, 36], the psychological distress morbidity in the current study was slightly higher than in studies focused on patients in pre-treatment or initial treatment stage. The possible reason might be that our patients had a longer length of time since diagnosis (M =15.1 months, SD=13.3 months) than the subjects in the prior studies [12, 36, 37]. Previous research indicated that psychological distress in lung cancer patient often persists and intensifies over time due to the increase of symptoms and more advanced disease conditions [12, 38]. Thus, medical professionals should assess and manage psychological distress concurrently with physical symptoms when delivering lung cancer interventions in the disease continuum. Our participants reported very high information care needs, psychological needs, and patient care and support needs. These needs were higher than those measured in other cancer types, such as prostate cancer [34, 39], oral cavity cancer, [15] breast cancer [7], and colorectal cancer [40]. Moreover, over 60% of patients reported moderateto-high unmet needs, including things helping self get well, cancer remission, benefits and side effects of treatment, and dealing with fears about disease spreading and return. It might reflect the extreme distress, threat, and uncertainty brought on by multiple symptoms [14] and the low 5-year survival rate of less than 15% of lung cancer patients [41]. Although the primary physician explained the disease- and treatment-related information to the patients before and during the treatment process in the clinical setting, our results strongly suggested that patient care needs exceeded those provided in the current medical system. The results also suggested improvement of

symptom management in controlling physical distress was not enough to meet the needs of lung cancer patients. Heath care professionals should critically identify the patients needs and provide comprehensive supportive care. However, unexpectedly, there was no significant difference in needs across treatment subgroups in this study. This may be due to the multi-facets of the factors related to unmet needs. For example, the physical and psychological effects of the treatment affect the patient rather than the treatment itself. It is worth noting that the follow-up patients reported similar levels of psychological distress and care needs even though they had lower levels of symptoms than the patients in active treatment. Previous research suggested that cancer patients in the post-treatment follow-up phase had complex concerns including symptom distress, psychological distress, and fears of relapse and uncertain future [6]. The results emphasized the importance of routinely assessing distress and needs and of offering supportive care to all lung cancer patients, including those who have completed treatment. Moreover, preparation for the transition from the treatment to follow-up phase should be a component of intervention. Similar to previous studies on patients with breast cancer [42] and oral cancer [15], anxiety was the only factor significantly related to all domains of care needs. According to the symptom management theories [13, 14], which state that the emotional response might raise the need for help-seeking, patients with higher anxiety can have higher care needs. This suggests the importance of being aware of patients anxiety levels as well as their care needs in order to offer comfort. Patients with higher depression had greater psychological needs but fewer information care needs. This was inconsistent with previous research [17, 18, 34] showing that patients with higher depression had increased information care needs. Our patients had a higher prevalence of clinical depression (25.7%) than those in other studies. Fewer needs for seeking information might reflect withdrawal and lack of interest in medical participation in depressed cancer patients [43]. The other explanation might be that depressed patients did not register needs for information to avoid receiving bad news and to preserve hope [44, 45]. Consistent with previous research [16, 18, 20], younger patients reported more unmet psychological care needs than did the seniors, and patients with higher educational levels reported more physical and daily care needs. The results indicated that younger people had greater impacts from cancer [20]. The other plausible reason might be that younger patients and those with more education were more likely to express their needs and seek help than were their older and lower education counterparts [16, 21, 22]. We suggest that different care strategies should support lung

1750

Support Care Cancer (2011) 19:17431751

cancer patients according to specific subgroups. For example, clinicians should actively provide psychological counseling to younger patients and carefully inquire of senior and lower education patients in case they do not express their needs. Although our results provide important information for the care of lung cancer patients, this study had limitations due to its cross-sectional nature in detecting the change of care needs during the cancer progression and treatment trajectory. In addition, for the purposes of this study, we recruited only lung cancer patients who were receiving active treatments or were in the survival period. Thus, our conclusions do not apply to terminally ill patients. Finally, though some patients who might have higher distress or care needs refused to take part, the high response rate (81.3%) in this study still provides valuable data about the distress and care needs of lung cancer patients undergoing active treatment or during their follow-up period.

References
1. American Cancer Society (2009) Global cancer fact and figure 2009. 2. Little AG, Gay EG, Gaspar LE, Stewart AK (2007) National survey of non-small cell lung cancer in the United States: epidemiology, pathology and patterns of care. Lung Cancer 57 (3):253260 3. National Comprehensive Cancer Network (2009) NCCN clinical practice guidelines in oncology. V1. 2009. Non-small-cell-lung cancer. http://www.nccn.org/professionals/physician_gls/PDF/ nscl.pdf. Accessed 16 Sep 2008 4. Kurtz ME, Kurtz JC, Stommel M, Given CW, Given B (2002) Predictors of depressive symptomatology of geriatric patients with lung cancer-a longitudial analysis. Psychooncology 11:1221 5. Cooley ME, Short TH, Moriarty HJ (2003) Symptom prevalence, distress, and change over time in adult receiving treatment for lung cancer. Psychooncology 12:694708 6. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 25:25 7. Girgis A (2000) Perceived needs of women diagnosed with breast cancer: rural versus urban location. Aust NZ J Public Health 24 (2):166 8. Surbone A, Baider L, WT S, Brames MJ, Ritternberg CN, Johnson J (2010) Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Support Care Cancer 18:255263. doi:10.1007/ s00520-009-0693-4 9. Tishelman C, Petersson LM, Degner LF, Sprangers MA (2007) Symptom prevalence, intensity, and distress in patients with inoperable lung cancer in relation to time of death. J Clin Oncol 25(34):53815389 10. Wang XS, Fairclough DL, Liao Z, Komaki R, Chang JY, Mobley GM, Cleeland CS (2006) Longitudinal study of the relaitonship between chemoradiation therapy for non-small-cell lung cancer and patient symptoms. J Clin Oncol 24(27):44854491 11. Whelan TJ, Mohide EA, Willan AR, Arnold A, Tew M, Sellick S, Gafni A, Levine MN (1997) The supportive care needs of newly diagnosed cancer patients attending a regional cancer center. Cancer 80(8):15181524 12. Hopwood P, Stephens RJ (2000) Depression in patients with lung cancer: prevalence and risk factors derived from quality-of-life data. J Clin Oncol 18(4):893903 13. Dodd M, Janson S, Facione N, Faucett J, Froelicher ES, Humphreys J, Lee K, Miaskowski C, Puntillo K, Rankin S, Taylor D (2001) Advancing the science of symptom management. J Adv Nurs 33(5):668676 14. Henly S, Kallas KD, Klatt CM, Swenson KK (2003) The notion of time in symptom experiences. Nurs Res 52(6):410417 15. Chen SC, Liao CT, Lin CC, Chang JTC, Lai YH (2009) Distress and care needs in newly diagnosed oral cavity cancer patients receiving surgery. Oral Oncol 45(9):815820 16. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Supportive care review group. Cancer 88(1):226237 17. Sanders SL, Bantum EO, Owen JE, Thornton AA, Stanton AL (2009) Supportive care needs in patients with lung cancer. Psychooncology 19(5):480489 18. Ream E, Quennell A, Fincham L, Faithfull S, Khoo V, WilsonBarnet J, Richardson A (2008) Supportive care needs of men living with prostate cancer in England: a survey. Br J Cancer 98:19031909 19. Cossich T, Schofield P, McLachlan SA (2004) Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res 13:12251233

Conclusion Lung cancer patients in this study had mild-to-moderate physical distress but very high psychological distress and unmet supportive care needs, regardless of their treatment status. The effect of symptoms and psychological distress on unmet supportive care needs is substantial. The findings provide guidance for health care professionals in improving lung cancer supportive care. First, health care professionals should strengthen their awareness and expertise in identifying the needs of and providing supportive care to lung cancer patients. Second, we strongly suggest a systematic assessment of the patients physical and psychological distress and care needs as the basis for providing improved overall care. Moreover, a comprehensive intervention, tailored to meet the care needs of lung cancer patients in the illness continuum, is essential. The intervention components should include symptom management, psychological distress reduced intervention, continuing counseling, information provision, and preparation for transition from the active treatment stage to the follow-up. Additional research examining longitudinal changes of care needs as well as testing possible interventions to meet lung cancer care needs are strongly recommended for future study.
Acknowledgement This study was supported by a grant from the National Health Research Institute, Taiwan, R.O.C. (NHRIEX98 9807PI). We would like to thank Dr. Girgis and the Centre for Health Research & Psycho-oncology for their permission to use the Cancer Needs Questionnaire short form. We gratefully acknowledge all the study participants for sharing their experiences. The authors also thank Marc Anthony and Marc D. Baldwin for their English editing. Conflict of interest No conflict of interest declared.

Support Care Cancer (2011) 19:17431751 20. Smith DP, Supramaniam R, King MT, Ward J, Berry M, Armstrong BK (2007) Age, health, and education determine supportive care needs of men younger than 70 years with prostate cancer. J Clin Oncol 25(18):25602566 21. Steginga SK, Campbell A, Ferguson M, Beeden A, Walls M, Cairns W, Dunn J (2008) Socio-demographic, psychosocial and attitudinal predictors of help seeking after cancer diagnosis. Psychooncology 17(10):9971005 22. Ramanadhan S, Viswanath K (2006) Health and the information nonseeker: a profile. Health Commun 20(2):131139 23. Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D (2008) Unmet needs of gynaecological cancer survivors: implications for developing community support services. Psychooncology 17(4):392400 24. Rainbird K, Perkins J, Sanson-Fisher R, Rolfe I, Anseline P (2009) The needs of patients with advanced, incurable cancer. Br J Cancer 101(5):759764 25. Li J, Girgis A (2006) Supportive care needs: are patients with lung cancer a neglected population? Psychooncology 15(6):509516 26. Steele R, Fitch MI (2008) Why patients with lung cancer do not want help with some needs. Support Care Cancer 16(3):251259 27. Cancer registry annual report, 2006 (2009) http://crs.cph.ntu.edu. tw/uploadimages/Y95-ALL.pdf. Accessed 16 Jan 2009 28. Lai YH (1998) Symptom distress and home care needs in patients receiving chemotherapy in an outpatient setting. Journal of Nursing Research (Chinese) 6:279289 29. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatry Scand 67(6):361370 30. Chen ML, Chang HK, Yeh CH (2000) Anxiety and depression in Taiwanese cancer patients with and without pain. J Adv Nurs 32 (4):944951 31. Foot G (1996) Needs assessment in tertiary and secondary oncologypractice: a conceptual and methodological exposition. University of Newcastle, Newcastle 32. Foot G, Sanson-Fisher R (1995) Measuring the unmet needs of people living with cancer. Cancer Forum 19(2):131135 33. Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH (1948) The use of nitrogen mustards in the palliative treatment of cancer. Cancer 1(4):634656 34. Steginga SK (2001) The supportive care needs of men with prostate cancer (2000). Psychooncology 10(1):6675

1751 35. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88(1):217225 36. Neron S, Correa JA, Dajczman E, Kasymjanova G, Kreisman H, Small D (2007) Screening for depressive symptoms in patients with unresectable lung cancer. Support Care Cancer 15(10):1207 1212 37. Akechi T, Okuyama T, Akizuki N, Azuma H, Sagawa R, Furukawa TA, Uchitomi Y (2006) Course of psychological distress and its predictors in advanced non-small cell lung cancer patients. Psychooncology 15(6):463473 38. Henoch I, Bergman B, Gustafsson M, Gaston-Johansson F, Danielson E (2007) The impact of symptoms, coping capacity, and social support on quality of life experience over time in patients with lung cancer. J Pain Symptom Manage 34(4):370379 39. Lintz K, Moynihan C, Steginga S, Norman A, Eeles R, Huddart R, Dearnaley D, Watson M (2003) Prostate cancer patients support and psychological care needs: survey from a non-surgical oncology clinic. Psychooncology 12(8):769783 40. Macvean ML, White VM, Pratt S, Grogan S, Sanson-Fisher R (2007) Reducing the unmet needs of patients with colorectal cancer: a feasibility study of the pathfinder volunteer program. Support Care Cancer 15(3):293299 41. Jemal A, Siegel R, Ward E, Hao Y, Xu J, Murray T, Thun MJ (2008) Cancer statistics, 2008. CA Cancer J Clin 58(2):7196. doi:10.3322/ca.2007.0010 42. Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Wain G (2007) Breast cancer survivors supportive care needs 2 10 years after diagnosis. Support Care Cancer 15(5):515523 43. Akechi T, Ietsugu T, Sukigara M, Okamura H, Nakano T, Akizuki N, Okamura M, Shimizu K, Okuyama T, Furukawa TA, Uchitomi Y (2009) Symptom indicator of severity of depression in cancer patients: A comparison of the dsm-iv criteria with alternative diagnostic criteria. General Hospital Psychiatry 31(3):225232 44. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K (2000) Cancer patients information needs and information seeking behaviour: in depth interview study. BMJ 320(7239):909913. doi:10.1136/bmj.320.7239.909 45. Fallowfield L, Ford S, Lewis S (1995) No news is not good news: information preferences of patients with cancer. Psychooncology 4 (3):197202

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.