Supportive care needs and health-related quality of life among Chinese lung cancer survivors

doi:10.4236/alc.2012.12002

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Vol.1, No.2, 5-12 (2012) Advances in Lung Cancer

http://dx.doi.org/10.4236/alc.2012.12002

Supportive care needs and health-related quality of

life among Chinese lung cancer survivors*

Dorothy Ngo-Sheung Chan1, Kai-Chow Choi1, Carmen Wing-Han Chan1,

Rayman Wai-Man Wan2, Suzanne So-Shan Mak2, Eliza Mi-Ling Wong1, Sek-Ying Chair1,

Winnie Kwok-Wei So1#

1The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong, China;

#Corresponding Author: [email protected]

2Department of Clinical Oncology, Prince of Wales Hospital, Hong Kong, China

Received 20 June 2012; revised 28 July 2012; accepted 15 August 2012

ABSTRACT

Purpose: The purpose of this study was to ex-

plore the supportive care needs and health-re-

lated quality of life (HRQoL) of lung cancer sur-

vivors, and to identify the association between

patient characteristics, HRQoL and supportive

care needs. Method: This was a sub-study of a

larger scale survey of cancer survivors’ suppor-

tive care needs. A total of 48 lung cancer survi-

vors were recruited from a regional teaching

hospital, and a three-part structured question-

naire was used to collect 1) socio-demographic

and clinical characteristics, 2) supportive care

needs and 3) health-related quality of life data.

Results: The three most commonly reported

unmet needs were all in the health-system in-

formation domain: 1) being informed about your

results as soon as possible (58%), 2) being in-

formed about cancer which is under control or

diminishing (50%), and 3) being informed about

things you can do to help y ourself get well (46%).

The second most common unmet need domain

was access to healthcare and ancillary support

services. The survivors generally reported sat-

isfactory HRQoL. However, household income

and unmet physical and psychological needs

were independently associated with HRQoL

among these survivors. Conclusion: The high

unmet needs in the health-system information

area call for a review of the content and amount

of information provided to l ung cancer surv iv ors.

In addition, more attention should be given to

lung cancer surviv ors with lo w incomes but high

physical and psychological unmet needs, who

require appropriate follow-up and lon g-term care

of a physical, social and psychological kind.

Keywords: Suppo rt ive Care Needs; Health-Related

Quality of Life; Lung Cancer Survivor

1. INTRODUCTION

Lung cancer is the commonest type of cancer in Hong

Kong and wor ldwide. It accoun ts for 12.7% of all cancers

[1]. Advances in treatment modalities have led to a steady

increase in survival, with an overall five-year relative

survival rate of 15.9% at all stages, which is still com-

paratively lower than with other cancer types [2]. During

the survival period, survivors often suffer from different

post-treatment hardships such as physical and psycho-

logical distress, decreased physical functioning and low-

ered engagement in moderate and strenuous activities

[3,4]. The presence of these multiple post-treatment

hardships leads to an increase in different supportive care

needs affecting survivors’ HRQoL [5,6].

Information on such care needs and HRQoL can prove

invaluable to healthcare providers when planning appro-

priate long-term follow-up care. Several studies have

been carried out to examine these needs, survivors re-

porting that they had high unmet supportive care needs in

the health-system and information and psychological

areas, in patient care and support, and in physical and

daily living [7-9 ]. Compared with survivors of other can-

cer types, it was found that lung cancer survivors ex-

perienced higher unmet supportive care needs in psy-

chological, physical and daily living areas [7].

Apart from supportive care needs, lung cancer survivors

often exhibited more clinically significant problems-

dyspnea, coughing and chest wall pain than the general

population [6,10]. Even long-term survivors still experi-

enced clinically significant dyspnea, fatigue and pain [11],

with a poorer HRQoL as a result [6,11]. Additionally, pre-

vious findings from studies conducted in North America

*Funding statement: This study was funded by the Chinese University

of Hong Kong.

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12

and Europe have shown that factors such as old age, male,

low income, extent of resection, squamous cell carcinoma

and adjuvant therapy, and high fatigue and pain scores are

associated with poorer HRQoL [11-13].

In Hong Kong, lung can cer accounted for 16 .8% of all

cancers in 2009 [14]. It remains a devastating disease

and imposes significant burdens on survivors and family

members, but little is known about Hong Kong Chinese

survivors’ supportive care needs and HRQoL after can-

cer treatment.

The aims of the study are to explore the needs and

HRQoL of lung cancer survivors and to examine the as-

sociation between these and patient characteristics. The

findings can then be used to inform changes in healthcare

and social services for this group of patients.

2. METHODS

This was a sub-study of a larger scale survey of cross-

sectional supportive care needs conducted in the period

from 2010 to 2011 [15]. Eligible lung cancer survivors

were recruited from a regional teaching hospital. Inclu-

sion criteria for recruitment were Chinese patients who 1)

were 18 or above at the time of diagnosis, 2) were diag-

nosed with primary cancer, 3) had completed all cancer

treatment within the last year, and 4) were literate in

Chinese. Those who 1) had a history of psychiatric dis-

order, 2) suffered from metastatic brain disease, or 3) had

any other type or recurrence of cancer were excluded

from the study.

2.1. Procedures

Permission to conduct the study was obtained fro m the

internal review board of the study institution. A research

assistant approached potential subjects at the out-patient

clinic; written consent to participation was obtained be-

fore the survey, and data were collected in face-to-face

interviews. Medical records were reviewed by the research

staff to collect demographic and clinical characteristics.

2.2. Data Collection

A structured questionn aire with th ree p arts was used to

collect 1) socio-demographic and disease characteristics,

2) supportive care needs and 3) health-related quality of

life data.

2.2.1. Socio-Demographic and Disease

Characteristics

The following socio-demographic and disease charac-

teristics were collected: age, gender, marital status, edu-

cational level, employment status, monthly household

income, religious belief, family history of cancer, co-

existing disease, stage of the disease, time since diagno-

sis and number of cancer treatment received.

2.2.2. Supportive Care Needs

The validated Chinese version of the Supportive Care

Needs Survey Form (SCNS-SF34) and Supplementary

Module of Access to Healthcare Services [16] were

adopted to assess the participants’ needs. The SCNS-

SF34 measures five dimensions: 1) physical/daily living

(5 items), 2) psychological state (10 items), 3) patient

care and support (5 items), 4) sexuality (3 items), and 5)

health systems and information needs (11 items). Par-

ticipants were asked to indicate, for each item, their level

of need for help over the past month, measured on a

five-point scale (1 = no need/not applicable, 2 = no

need/satisfied, 3 = low need, 4 = moderate need and 5 =

high need). Sub-scale scores on the five dimensions were

calculated by summing individual item scores and re-

scaling to a 0 - 100 range, with higher scores indicating a

greater extent of the underlying needs dimension. Indi-

vidual items on the SCNS-SF34 or supplementary mod-

ule can also be divided into “no need” and “some-to-high

need” to assess individual unmet needs.

2.2.3. Health-Related Quality of Life

The Chinese version of the Functional Assessment of

Cancer Therapy-General version FACT-G (Ch) was

used to examine the effect of cancer and its treatment

on the HRQoL of the participants. This is a validated

28-item questionnaire with four domains: physical, emo-

tional, social and functional well-being, with each item

rated on a five-point scale (0 = not at all; 1 = a little bit; 2

= somewhat; 3 = quite a bit; 4 = very much). Both total

and sub-scale scores for the well-being dimension are

measured, higher scores indicating better functional

status.

2.3. Data Analysis

Skewed continuous variables and normal-like distrib-

uted variables were respectively presented as medians

(inter-quartile ranges) and means (standard deviations).

Categorical data were presented as frequencies (percent-

ages). Normality of the continuous variables was as-

sessed using the skewness and kurtosis statistic and

graphically by Q-Q plot. The variables, travelling time to

hospital and time since diagnosis, were natural log-

transformed to correct their skewness before being en-

tered into the analysis. Univariate analyses of the asso-

ciation between the total score on FACT-G and each of

the participant characteristics listed in Table 1 and the

subscale scores in each of the SCNS-SF34 domains were

assessed using the Student’s t-test, one-way ANONA or

Pearson correlation coefficient, as appropriate. Variables

with p < 0.25 in univariate analyses were selected as can-

didate variables for stepwise multivariable regression to

delineate variables independently associated with the

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12

Table 1. Socio-demographic and disease characteristics of the study sample (n = 48).

Mean (SD) / median (IQR) / n (%)

Socio-demog raphic characteristics

Age (years)† 61.0 (9.2)

Sex

Male 36 (75.0%)

Female 12 (25.0%)

Marital status

Single/divorced/widowed 8 (16.7%)

Married/cohabitating 40 (83.3%)

Educational level

No formal education/primary 22 (45.8%)

Secondary or above 26 (54.2%)

Employment status

Unemployed/retired/homemaker 44 (91.7%)

Employed 4 (8.3%)

Household monthly i nc ome (HK$)

10,000 30 (62.5%)

10,001 - 30,000 14 (29.2%)

>30,000 4 (8.3%)

Time travelling from home to hospital (minutes) 42 (30 - 60)

Disease characteristics

Time since diagnosis (months) 12 (10 - 18)

Stage of disease

II 13 (27.7%)

III 34 (72.3%)

Number of cancer treatments

1 10 (20.8%)

2 38 (79.2%)

Any co-existing di sease

No 29 (60.4%)

Yes 19 (39.6%)

Family history of cancer

No 27 (56.3%)

Yes 21 (43.8%)

Data marked with † are presented as means (standard deviations) and with  as medians (interquartile range), all others as frequencies (%).

quality of life score. All analyses were performed using

SPSS 18.0 (SPSS Inc, Chicago), and all tests were two-

sided, with a p-value of <0.05 considered statistically

significant.

3. RESULTS

A total of 48 Hong Kong lung can cer patients who had

finished their treatment no more than a year earlier were

recruited to the study. The participants were aged from

34 to 80, with a mean of 61.0  9.2, and 75% were male.

Detailed demographic and disease characteristics are

given in Table 1.

3.1. Health-Related Quality of Life

(FACT-G) and Supportive Care

Needs (SCNS-SF34)

The sub-scale and total scores for FACT-G and

SCNS-SF34 are given in Ta b l e 2 . There was an overall

mean score of 84 (SD: 15.3, range: 1 - 108) on HRQoL.

The unmet needs scores varied from 2.6 to 27.5 (range 1

- 10) across five domains.

Percentages of unmet needs of all individual items on

SCNS-SF34 and supplementary module are listed in Ta-

ble 3. The three most commonly reported were all in the

health system and information domain: being informed

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12

Table 2. Health-related quality of life and supportive care needs of the study sample.

Mean (SD)

Health-related quality of life (FACT-G)

Physical well-being [range: 0 - 28] 2 3.1 (4.8)

Social/family well-being [range: 0 - 28] 2 2.0 (5.6)

Emotional well-being [range: 0 - 2 4] 2 0.4 (4.1)

Functional well-being [range: 0 - 2 8] 18.8 (5.8)

Total score [range: 0 - 108] 84.3 (15.3)

Supportive care needs (SCN-SF34)

Physical [range: 0 - 100] 20.5 (21.7)

Psychological [range: 0 - 100] 14.5 (18.6)

Sexual [range: 0 - 100] 2.6 (6.0)

Patient care [range: 0 - 100] 14.2 (14.9)

Health system and inform at ion [range: 0 - 100] 27.5 (20.4)

The FACT-G scales were scored so that larger values correspond to a better underlying dimension of health-related quality of life, whereas a

higher SCN-SF34 subscale score indicates a larger underlying domain of supportive care need.

Table 3. Some unmet supportive care needs—individual items in SCN-SF34 and the supplementary module—among Hong

Kong cancer patients.

Some unmet suppor ti ve ca re ne ed s n (%)

Physical

At least one of the above unmet needs 20 (41.7%)

Not being able to do the things you used to do 12 (25.0%)

Pain 11 (22.9%)

Feeling unwell a lot of the tim e 10 (20.8%)

Work around the home 9 (18.8%)

Lack of energy/tiredness 9 (18.8%)

Psychological

At least one of the above unmet ne e ds 16 (33.3%)

Worry that the results of treatm e nt are beyond your control 10 (20.8%)

Uncertainty about the future 9 (18.8%)

Fears about the cancer spreadi n g 8 (16.7%)

Concerns about the worries of those close to you 6 (12.5%)

Feelings about death and dying 6 (12.5%)

Learning to feel in control of your situ atio n 6 (12.5%)

Anxiety 5 (10.4%)

Keeping a positive outlook 4 (8.3%)

Feeling down or depressed 3 (6.3%)

Feelings of sadness 3 (6.3%)

Sexuality

Changes in sexual feelings 0

Changes in sexual relat io n sh i ps 0

Being given information about sexual relationships 0

At least one of the above unm et needs 0

Patient care

At least one of the above unmet ne e ds 24 (50.0%)

Hospital staff attending promptly to your physical needs 16 (33.3%)

Reassurance by medical staff that the way you feel is normal 11 (22.9%)

More choice about which cancer speci a l i s ts you see 8 (16.7%)

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12 9

Continued

Hospital staff acknowledging, and showing sensitively to, your feelings and emotional needs 6 (12.5%)

More choice about which hospital you attend 4 (8.3%)

Health system and information

At least one of the above unmet ne e ds 35 (72.9%)

Being informed about your test results as soon as feasible 28 (58.3%)

Being informed a bout cancer which is under control or diminishing (that is, remission) 24 (50.0%)

Being informed about things y ou can do to hel p yourself get well 22 (45.8%)

Being given explanations of those tests for which you would like explanations 20 (41.7%)

Being adequately informed about the benefits and side-ef fects o f treatments before

you choose to have them 18 (37.5%)

Having one member of hospi ta l s t aff you can talk to about all aspects of

your condition, treatment and follow-up 13 (27.1%)

Being treated in a hospital or clinic that is as physically pleasant as possible 12 (25.0%)

Being treated like a person a n d not just another case 8 (16.7%)

Having access to professional counselling (e.g., psychologist, social worker,

counsellor, nurse specialist) if you, family or friends need it 7 (14.6%)

Being given information (written, diagrams, drawings) about aspects of

managing your illness and its side-effects at home 7 (14.6%)

Being given written information about the important aspects of your care 5 (10.4%)

Supplementary module

At least one of the above unmet ne e ds 34 (70.8%)

Monetary allowance for travel, treatment and equipment expenses 21 (43.8%)

Comfortable waiting room 10 (20.8%)

Food and drink available in or near the clinic waiting room 9 (18.8%)

Transport service to and from the hospital or clinic 8 (16.7%)

Brochures about services a nd b e n ef i t s for patients with cancer 8 (16.7%)

24-hour telephone support and cancer advisory service 8 (16.7%)

Drop-in counselling and sup port service 5 (10.4%)

Library of books and videos about cancer and related issues 5 ( 1 0.4%)

Counselling services (e.g. counsellor, psychologist, social worker, nurse

specialist) at the hospital or clinic for your family/ partner 3 (6.3%)

Easy car parking at the hospita l o r clinic 3 (6.3%)

Home nursing service (e.g. nurse specialist visiting service) 3 (6.3%)

Home cleaning service (e.g. house cleaner service) 3 (6.3%)

Respite care 2 (4.2%)

Relaxation classes 2 (4.2%)

Child-mindi n g at the hospital or clinic 0

about 1) your results as soon as possible (58%) , 2) cancer

which is under control or diminishing (50%), and 3)

things you can do to help yourself get well (46%). In fact,

most participants (73%) reported at least one unmet need

in relation to healthcare information, and about 71% had

at least one unmet need related to access to the healthcare

and ancillary support services domain. In the physical

and psychological domains, pain, feeling unwell, fatigue,

worry about treatment results and uncertainty about the

future often constituted unmet needs. The proportions of

at least one unmet need in the patient care, physical,

psychological and sexuality domains were respectively

50%, 42%, 33% and 0% (Table 3).

3.2. Association between HRQoL, Patient

Characteristics and Supportive

Care Needs

Stepwise multivariable regression analyses, using

those variable s with p values < 0.25 in un ivariate analyses

as candidate variables, revealed that household income

and physical and psychological unmet needs were inde-

pendently associated with HRQoL among the lung can-

cer survivors. Patients with medium and high household

incomes had significantly higher total FACT-G scores

than those with low incomes (regression coefficient =

12.7, p < 0.001 for those with middle incomes; regres-

sion coefficient = 14.0, p = 0.01 for those with high in-

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12

comes). Patients with higher scores in the physical or

psychological dimensions of SCNS-SF34 were associ-

ated with lower total FACT-G scores (regression coeffi-

cient = –0.22 (p = 0.007) and –0.43 (p < 0.001) for

physical and psychological dimensions respectively).

Other disease characteristics (e.g. stage of cancer, time

since diagnosis) were not associated with HRQoL. Table 4

hows the association between HRQoL and other variables. s

Table 4. Association betwe e n heath-related quality of life (FACT-G) and other variables.

Univariate analysis Multivariate analysis

Disease characteristics Mean (SD)/correlation coefficient# p-value B SE p-value

Socio-demog raphic characteristics

Age (years)† –0.173 0.239 NS NS NS

Sex

Male 84.7 (13.5) 0.810 – – –

Female 83.2 (20.5)

Marital status

Single / d i vorced / widowed 82.0 (15.2) 0.642 – – –

Married / cohabitating 84.8 (15.5)

Educational level

No formal education / primary 80.5 (15.2) 0.116 NS NS NS

Secondary or above 87.5 (15.0)

Employment status

Unemployed / ret ired / homemaker 82.8 (15.1) <0.001 NS NS NS

Employed 100.8 (5.0)

Household monthly i nc ome (HK$)

10,000 80.5 (14.6) 0.037 (ref)

10,001 - 30,000 88.4 (15.7) 12.667 3.180<0.001

>30,000 98.8 (6.1) 13.997 5.2140.010

Living alone

No 85.1 (15.0) 0.189 NS NS NS

Yes 73.0 (19.1)

Time travelling from home to hospital (minutes)† –0.037 0.804 – – –

Disease characteristics

Time since diagnosis (months)† 0.199 0.175 NS NS NS

Stage of disease

II 88.0 (13.1) 0.304

III 82.8 (16.2)

Number of cancer treatments

1 74.5 (18.3) 0.021 NS NS NS

2 86.9 (13.6)

Any co-existing di sease

No 85.6 (15.4) 0.490 – – –

Yes 82.4 (15.4)

Cancer is under control or diminishing

Yes 85.5 (13.8) 0.474 – – –

No/unsure 82.1 (18.2)

Family history of cancer

No 82.8 (16.7) 0.442 – – –

Yes 86.3 (13.5)

Supportive care needs

Physical –0.569 <0.001 –0.218 0.0770.007

Psychological –0.624 <0.001 –0.426 0.089<0.001

Sexual –0.019 0.896 – – –

Patient care –0.454 0.001 NS NS NS

Health system and inform ation –0.417 0.003 NS NS NS

#Pearson’s correlation coefficients between the independent and outcome variables are presented for continuous independent variables, whereas means (standard

deviations) of the outcome variables are presented for categorical independent variables; †log-transformed to correct skewness when entered into statistical

analyses; ref: reference group of the independent categorical variables analysed by creating dummy variables; B: regression coefficient; SE: standard error of

the regression coefficient; NS: not statistically significant in stepwise multivariable regression; –: not entered into multivariable regression (univariate analysis

of p value  0.2).

D. N. S. Chan et al. / Advances in Lung Cancer 1 (2012) 5-12 11

4. DISCUSSION

4.1. Unmet Supportive Care Needs

A recent study [17] shows that 70% - 90% of patients

wanted to seek help from others regarding their informa-

tional needs. In the present study, the results underline

the fact that lung cancer survivors in Hong Kong have

unmet needs for health information. Survivors rated

health system and information as their top unmet needs,

while in Sander et al. [9] and Li and Girdis [7], physical

and daily living and p sychological needs are respectiv ely

ranked top. The same result was noted in the proportio ns

of at least one unmet need in each domain when com-

paring the present and previous studies [9]. In addition,

within the health system and information domain, over

half of the respondents indicated that they had highest

unmet needs in “being informed about your results as

soon as possible” while in the Sanders et al. study 34% of

respondents cited “being informed about things one could

do to help get well” as the most common unm et need.

These findings could be due to different resources be-

ing allocated by the healthcare systems of different

countries. Lung cancer patients always find health sys-

tem and information important no matter which phase

they are in [18]. Starting from cancer diagnosis to post-

treatment phase, healthcare providers have provided con-

tinuous disease- and treatment-related informational

support to lung cancer patients. However, it seems that

Hong Kong patients’ demand for information far exceeds

its present provision. The result indicates the necessity

for further improvement in the health system and infor-

mation area to meet these increasing needs.

4.2. Association between HRQoL and

Patient Characteristics and

Supportive Care Needs

With respect to socio-demographic characteristics, our

results show that household income is the only factor

showing an association with HRQoL. Survivors with

medium and high household income had significantly

higher total HRQoL scores, while the reverse was ob-

served in the low income group, consistent with the

findings of a previous study [13]. In the present study,

92% of the respondents were unemployed and 63% of

their household monthly income was less than $10,000

(US$1285). Their daily expenditure probably depended

on their family or their pension, imposing financial strain

on both survivors and their families. Household income

is found to be closely related to employment status and

earnings. According to Syse, Tretli and Kravdal [19],

contracting cancer reduces patients’ chances of employ-

ment by 30% - 40%, and the earnings of those in em-

ployment by 26%. Lung cancer patients are obviously

affected by a decrease in employment, which signifi-

cantly affects their monthly household income and thus

their HRQoL [13,19].

In the supportive care needs survey, both physical and

psychological domains were found to have a significant

negative association with HRQoL. In these domains,

pain, fatigue, worry about treatment results and uncer-

tainty about the future were the major issues that con-

cerned respondents the most, consistent with a previous

study’s finding that fatigue and pain had the greatest

impact on lowering HRQoL [20].

5. LIMITATION

Small sample size is the limitation of the present study

as it was a sub-study of a larger scale cross-sectional

study of cancer patients’ supportive care needs and

HRQoL. Further study including larger sample size fo-

cusing on lung cancer patients is recommended.

6. CONCLUSION

Lung cancer, constituting a significant proportion of

all cancer types, continues to impose a significant burden

on patients, survivors and healthcare systems. Under-

standing lung cancer survivors’ supportive care needs

certainly helps to enhance the follow-up healthcare ser-

vice, leading to better adjustment during the survival

phase, and in the long run the burden on the healthcare

system will be reduced. The present study confirms the

high unmet needs in the health system and information

area, and shows how important it is to review and expand

the information given to these survivors. Additionally,

more attention should be given to survivors on low in-

comes but with high physical and psychological unmet

needs, as they are prone to suffer a lower HRQoL.

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