Journal of Cystic Fibrosis 8 (2009) 104 – 109

www.elsevier.com/locate/jcf

Life satisfaction of adolescents and adults with cystic fibrosis: Impact of

partnership and gender
Tanja Besier a,⁎, Tim G. Schmitz b , Lutz Goldbeck a
a
University Hospital Ulm, Department of Child and Adolescent Psychiatry/Psychotherapy, Steinhoevelstr. 5, 89075 Ulm, Germany
b
Pediatric Rehabilitation Clinic St. Maria, Riedlesweg 9, 87541 Bad Hindelang-Oberjoch, Germany
Received 3 July 2008; received in revised form 15 October 2008; accepted 20 October 2008
Available online 12 November 2008

Abstract

Background: This is the first study to assess the impact of gender and partnership on life satisfaction in adolescents and adults with CF, using a
model combining subjective importance and satisfaction ratings.
Methods: Life satisfaction of 243 CF patients (16–58 years, M = 29.6, SD = 7.4, 46.9% male) was assessed with the Questions on Life Satisfaction
(FLZM). The effects of gender and partnership on life satisfaction were calculated.
Results: Significantly less males than females reported living with a partner (χ2 = 16.5, p b 001). Gender only had a significant effect on health-
related life satisfaction, with females reporting worse life satisfaction. Partnership had small to large effects on general, health-related and CF-
specific life satisfaction (η2 = .049–.144). Participants with partners always reported higher life satisfaction than those without partner. However,
no significant interaction effect of partnership and gender could be shown.
Conclusions: Having a partner is associated with higher life satisfaction, regardless of the patient's gender and might have beneficial effects on
medical outcomes.
© 2008 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Keywords: Cystic fibrosis; Life satisfaction; Gender differences; Partnership

1. Background This so called “gender gap” seems to be greater for younger

Cystic fibrosis (CF) is the most common life-limiting
recessively inherited condition among Caucasian populations,
with the progression of lung disease being the major determinant
of survival. Technical advances and better medical management
during the past decades have significantly extended life
expectancy, with the majority of adequately treated patients
with CF surviving into adulthood [1]. However, there is
internationally corroborated evidence indicating that the pro-
gression of CF is more rapid in females than males, in terms of a
decline in pulmonary functioning and increased mortality [2,3].
⁎ Corresponding author. Tel.: +49 731 500 61700; fax: +49 731 500 61682.
E-mail address: Tanja.Besier@uniklinik-ulm.de (T. Besier).
1569-1993/$ - see front matter © 2008 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
doi:10.1016/j.jcf.2008.10.001
patients with CF, especially subjects under the age of 20 [3]. A
recent English study suggests that possible gender differences
might be caused by suboptimal treatment practice [4].
Assessing and understanding determinants of quality of life
(QoL), defined as a multi-dimensional construct including
physical, emotional, and social well-being and functioning [5],
in individuals with CF has become increasingly important, and
involves taking into account multiple medical and psychosocial
aspects of the disease which are gender specific (e.g.,
differences in progression of the disease, and reproductive
abilities). Several studies have shown that females generally
report worse QoL than males with chronic illnesses [6–8]. An
American study assessed gender differences in the health-
related QoL of adolescents with CF [9]. Again, poorer self-
reported quality of life was found in females despite controlling
for objective health parameters. It is known that objective health
parameters are only moderately associated with QoL [10,11],
 T. Besier et al. / Journal of Cystic Fibrosis 8 (2009) 104–109
whereas gender differences in life satisfaction of patients with
CF have yet to be clarified.
Besides physiological parameters, such as the above men-
tioned more rapid disease progression in females, various
psychosocial variables may contribute to the gender differences
observed in quality of life. Social support for example plays an
important role in the adjustment to chronic conditions and is also
likely to have a significant influence on patient QoL [12,13].
Evidence suggests that there is a significant gender difference
with social support being even more important for female than
for male patients [13]. Having a stable partnership is a unique
source of support, even though close relationships can also have
negative effects, e.g., in terms of overprotection [14]. Growing
into adulthood, establishing a stable partnership is an important
developmental task for young adults with CF, too. Consistently
with the assumption of partnership as source of social support it
was shown that having a partner is significantly associated with a
better QoL in adults with CF [15]. Moreover, previous studies
found gender differences in the frequency of partnership. There
are a few studies showing that females with CF are nearly
comparable to age matched controls in terms of being married, or
having sexual relationships [16,17]. By contrast, a survey in the
United Kingdom reported that only 26% of male patients with
CF were married or co-habiting [18].
Since the few studies conducted so far have shown that
females with CF more often have romantic relationships than
male patients, this is supposed to have a potentially beneficial
effect on quality of life. However, this suggestion contradicts
the consistent finding, that women with CF report worse QoL
than their male counterparts. So far, no studies have focused on
the impact of partnership status on QoL in patients with CF.
Whereas many of the existing QoL instruments are rather
covering the person's functioning and physical well-being, thus
the more objective aspects of perceived health, we chose life
satisfaction, which is defined as the subjectively perceived
quality of life based on individual preferences and reported
satisfaction in multiple life domains [19] as the main outcome
parameter.
We investigated the effect of partnership status on life
satisfaction separately for females and males with CF, exploring
the following study questions:
1. Are there any gender differences in the frequency of
partnership?
In line with the literature, we expected females to report a
higher frequency of living in a stable partnership.
2. Are there any differences in life satisfaction of males and
females with and without partner? Does partnership moderate
the association between gender and life satisfaction?
We expected males to generally report a higher life
satisfaction, as this is consistently found in the international
QoL literature. Males with partner were supposed to report the
highest life satisfaction, while we expected females without
partner to report worst life satisfaction.
105
2. Methods
2.1. Instrument
The Questions on Life Satisfaction FLZM [19] instrument is
a multidimensional measure of general and health-related life
satisfaction in eight domains of daily life respectively. The
domains assessed in the general module are: friends, leisure
activities, general health, income/financial security, occupation/
work, housing/living conditions, family life/children and
partnership/sexuality. The domains measured by the health-
related module without reference to disease-specific problems
include: physical condition/fitness, ability to relax, energy/zest
for life, mobility, vision and hearing, freedom from anxiety,
freedom from aches and pain, and independence from help/care.
The instrument allows for separate subjective importance and
satisfaction ratings and satisfaction scores weighted by
importance can be calculated. Each domain is evaluated twice
on 5-point rating scales ranging from 1 (not important/
dissatisfied) to 5 (extremely important/very satisfied). Weighted
scores for each item are then calculated by the following
formula: weighted satisfaction = (importance rating − 1) ×
((2 × satisfaction rating)− 5) [19]. The item specific weighted
scores can range from − 12 to+ 20. Negative scores indicate
dissatisfaction with the specific domain, whereas positive scores
indicate satisfaction. Domains without subjective importance do
not count and have no impact on the individual life satisfaction.
Two total scores ranging from − 96 to+ 160 can be computed by
summing up the eight general and the eight health-related
scores. The higher the scores, the better the satisfaction with
general life and health status respectively is considered to be.
Because the generic FLZM does not assess CF-specific
aspects of life satisfaction, a disease specific module, called
FLZM-CF [20], was developed. CF specific life satisfaction is
measured on nine dimensions: freedom from dyspnea/cough,
abdominal complaints, sleep, eating, therapy routine, adherence
to daily therapy, being needed by others, understanding by
others and freedom from disadvantage due to CF. Scoring and
calculating an overall score is done in correspondence with the
procedure reported above. The total score ranges from − 108 to
+180, with higher scores indicating a higher satisfaction.
The entire questionnaire takes about 15 min to complete.
Sufficient reliability (Cronbach's α = .82–.89) and validity of
the FLZM and the FLZM-CF have been reported in previous
studies using the instrument with adolescent and adult CF
populations [15,20,21].
2.2. Procedure
A reanalysis of a pre-existing sample was conducted. The
original sample was obtained using a written invitation to take
part in a study evaluating the psychometric properties of the
FLZM-CF, which was created in accordance with the local IRB
protocol. With the help of the German Cystic Fibrosis Associa-
tion all patients with CF above the age of 15 years registered
in the associations' mailing list (N = 750) were contacted, and
provided with written study information and the questionnaire.
106 T. Besier et al. / Journal of Cystic Fibrosis 8 (2009) 104–109

33% of the eligible members of the mailing list (N = 248) gave

written informed consent and took part in the study, responded to
the FLZM, and sent their responses back anonymously. The
study participants also provided data on their medical and social
situation. Unfortunately, due to limited personal resources no
reminders were sent out in order to increase the participation
rate. Five responders had to be excluded from the analyses
because they were too young (b 16 years). Due to the anonymous
recruitment of participants, the study did not allow for group
comparisons with non-participating individuals.

2.3. Statistical analyses

FLZM raw scores were transformed into weighted scores and
total scores were calculated according to the formula reported in
the manual. Gender differences were calculated using χ2 tests
for categorical variables and t-tests for independent samples for
continuous variables. In order to test the effect of gender and
partnership status on life satisfaction, three univariate analyses
of covariance (ANCOVAs) were calculated, with gender (male/
female) and partnership status (with partner/without partner) as
independent variables and the FLZ total scores as dependent
variables, controlling for age effects and lung function
Fig. 1. Means of the three global life satisfaction (LS) scores by gender and
partnership status.
(FEV1%). A possible moderating effect of partnership on the
association between gender and life satisfaction was tested.
Effect sizes were calculated using η2, with η2 N .01 as small,
η2 N .10 as medium and η2 N .25 as large effects [22]. All
statistical analyses were done with the software package SPSS
version 12.0 for Windows.
3. Results

Table 1 3.1. Sample description

Sample characteristics
Characteristics Females Males Gender differences The final sample consisted of 243 adolescents and adults
(N = 129) (N = 114) with CF (aged 16–58 years, M = 29.6 years, SD = 7.4, 46.9%
Age in years male), whose sample characteristics are shown in Table 1. No
Range 16–58 16–58 n.s. age effects were observed. The medical data of the sample are
Mean 29.6 29.7
comparable with the data of 1977 CF patients (N 17 years) who
Standard deviation 7.9 6.8
Education in % are registered in the German CF register [1], with similar levels
Primary school 10.9 24.6 χ2 = 8.144, df = 1, p = .004 of FEV1% (M = 58.9, SD = 24.8), and body mass index
(9 years) (M = 20.5, SD = 2.9). Gender differences also occurred with
Secondary school 89.1 74.6 respect to level of education, professional life and living
(N9 years)
situation (see Table 1). Compared to males, female participants
Job in %
Full-time 23.3 36.8 χ2 = 12.015, df = 5, p = .035 had a higher level of education (89.1% of females with higher
Part-time 17.1 12.3 education, compared to 74.6% of males) and were less likely to
Still in education 17.1 14.0 live with their parents (20.9% of females were living in their
Disability benefits 38.0 26.3 parents' household, compared to 32.5% of males).
Unemployed 3.1 3.5
Living situation in %
Separate household 79.1 67.5 χ2 = 4.144, df = 1, p = .042 3.2. Gender differences in partnership status
With parents 20.9 32.5
Partnership in % There was a significant gender difference in the proportion of
Yes 72.9 47.4 χ2 = 16.527, df = 1, p b .001 participants in a partnership (χ2 = 16.527, df = 1, p b .001), with
No 27.1 52.6
females having a partner in 72.9% of the cases, whereas only
FEV1%
Range 21–118 15–121 n.s. 47.4% of males with CF reported having a partner.
Mean 62.5 63.0 There was no gender difference in the importance rating of
Standard deviation 23.7 24.1 having a partner (t(241) = 1.657, p = .10). However, female par-
BMI ticipants reported higher satisfaction with partnership (t(236) =
Range 14–27 13–31 t(238) = − 2.805, p = .005
2.758, p = .01) than males with CF.
Mean 20.0 20.9
Standard deviation 2.4 2.7
Daily home therapy in hours 3.3. Group differences in life satisfaction
Range 0–7 0–6 n.s.
Mean 2.1 2.0 Fig. 1 depicts the means of the weighted satisfaction scores
Standard deviation 1.4 1.4
of the FLZM modules (general, health-related, and CF-specific
 T. Besier et al. / Journal of Cystic Fibrosis 8 (2009) 104–109
Table 2
Results of three ANCOVAs for weighted life satisfaction scores as dependent factors and gender and partnership status as independent factors, controlled for age and
lung function (FEV1%); significant results (p b .05) in bold
df Main effect Main effect
gender partner
F p η2 F p
General module 1/223 0.044 .834 .000 37.374 .000
Health-related module 1/223 9.558 .002 .041 11.436 .001
CF-specific module 1/223 1.892 .170 .008 13.081 .000
life satisfaction) for males and females with and without
partners.
The results of the ANCOVAs are presented in Table 2. The
two covariates, lung function (FEV1%) and age were only
slightly correlated with each other (r = − 16, p = .05), and were
thus included in all analyses.
For general life satisfaction there was a significant main
effect for partnership (F1; 223 = 37.4, p b .001), whereas no
significant effect for gender occurred. The η2 coefficient
indicates a medium effect of partnership on general life
satisfaction (η2 = 0.14). As expected, the effect of partnership
on general life satisfaction proved to be especially distinct in the
life domain of partnership/sexuality (η2 = .50). The main
effect of partnership was also demonstrated for health-related
(F1;223 = 11.4, p = .001) and CF-specific life satisfaction (F1;223 =
13.1, p b .001); with small effect sizes. Gender had a significant
effect only on health-related life satisfaction (F1;223 = 9.6,
p = .002), with the η2 coefficient indicating a small effect
(η2 = 0.04). No interaction effects of gender × partnership status
occurred in any of the life satisfaction modules, thus no
moderating effect of partnership status on the correlation between
gender and life satisfaction can be assumed. FEV1% was a
significant predictor of life satisfaction in general, health-related
and CF-specific life satisfaction scores (p ≤ .001), whereas age
effects explained additional variance in health-related and CF-
specific life satisfaction (p = .033 and p = .027 respectively).
4. Discussion
Even though partner and social support are known to have an
impact on health-related QoL and international studies
consistently report gender differences in QoL, no study so far
has systematically assessed a possible effect of partnership on
QoL. To our knowledge, this is the first study to investigate the
moderating effect of partnership on gender-specific life
satisfaction in adolescents and adults with CF.
Consistent with our first hypothesis, in the current study far
more female CF patients reported to have a partner, compared to
males with CF. This is in line with the only study found in the
international literature reporting that significantly fewer men
with CF have stable romantic relationships or marriages than do
women with CF [18]. Different fertility rates of males and
females with CF may be one reason for the gender-specific
prevalence of living in a partnership. Over the years, repro-
ductive issues are likely to play a significant role in partner-
ships. There is no reason to assume that compared to their
healthy peers, people with CF would judge building a family
107
Interaction effect Effect of Effect of
gender × partner covariate age covariate fev1%
η2 F p η2 F p F p
.144 0.003 .954 .000 1.427 .234 10.497 .001
.049 1.150 .285 .005 4.586 .033 30.980 .000
.055 0.023 .879 .000 4.926 .027 18.215 .000
and having children to be less important [23]. This is supported
by the results of the importance ratings regarding the life
domain partnership/sexuality in this study. About 95% of male
individuals with CF are infertile because of congenital bilateral
absence of the vas deferens [24]. Only due to the advent of
modern assisted reproductive techniques it is now potentially
possible for infertile men with CF to father children [24,25]. It
has been shown before that the majority of men with CF desire
more sexual and reproductive health information [26]. About
22% of the men with CF in this survey reported that infertility
seriously affected their personal relationships and more than
80% stated that they desired to have their own children. In
contrast, it is now widely acknowledged that women with CF
experience only a modest reduction in fertility and are able to
make informed decisions about reproduction, just as their
healthy peers do [27]. Pregnancies in women with CF were first
described in the 1960s [28] and are nowadays usual.
Consistent with the literature [7,9], females in our study
reported worse health-related life satisfaction than males.
However, controlling for age and lung function no significant
gender differences were found for general and CF-specific life
satisfaction. In contrast, significant effects of having a partner
were consistently shown for general, health-related and CF-
specific life satisfaction. There was no significant interaction
effect between gender and partnership, thus showing that living
in a partnership is significantly related with life satisfaction,
regardless of the patient's gender. However, the study does not
allow for further interpretation of the role of partnership. A
moderating effect could not be found and further variables, such
as gender specific societal pressures (e.g., marriage, building a
family) should be taken into account to explain the association
of partnership and life satisfaction.
Our findings are in line with several studies showing the
importance and influence of social and partner support on
quality of life in other chronic conditions [12,13]. A possible
explanation might be that social support can enhance optimism
and raise more positive expectations about the future, as has
been shown [29]. The current study does not allow conclusions
about the quality and/or stability of partnership status, even
though no gender differences in the weighted importance × sa-
tisfaction scores of the life domain partnership were observed.
The fact that having a partner alone was able to explain a huge
part of variance in life satisfaction gives reason for further
studies investigating the impact of partnership status on quality
of life and disease management in patients with CF. The study
covered several developmental stages with age ranging from
16–58 years. It has to be taken into account that the frequency
108 T. Besier et al. / Journal of Cystic Fibrosis 8 (2009) 104–109
and importance of partnership, as well as the significance and
the degree of social support provided, is likely to vary with age.
To disentangle the association between life satisfaction,
partnership and age further studies, comparing more homo-
geneous age groups and assessing the degree of support
provided by a partner are clearly needed.
Our study has several limitations. Primarily, due to our
sampling procedure, contacting the individuals with CF
registered in the German CF associations' mailing list, no
information on non-participants could be obtained. Thus, no
assumptions can be made on the direction of potential selection
biases and their impact on the study results. Particularly, we had
no information about partnership status of the non-participants,
so it is not possible to evaluate how similar our study group was
in this respect to the general German CF population. However,
the medical data of our study sample were comparable to the
registered German CF population, indicating a quite represen-
tative study group. The large sample size also has the favourable
effect of minimizing sample biases. However, gender differ-
ences in the socio-demographic variables could be observed,
which might in part have biased the study findings. We only
controlled for age effects and lung function in our analyses.
Other factors that might have an impact on life satisfaction, e.g.
body mass index or colonization with pseudomonas were not
considered. Because the study used no control group design, it
was not possible to compare the gender-specific patterns in life
satisfaction and partnership status with a healthy control group
or another group of patients with chronic conditions. Thus
interpretations of the findings may only be made regarding
adolescents and adults with CF.
5. Conclusions
The results of this study suggest that partnership plays an
important role in maintaining high life satisfaction. Having a
partner is obviously a stronger predictor of life satisfaction than
gender in patients with CF and might be helpful in maintaining
good quality of life. In turn, this might lead to more favourable
medical outcomes and better therapy adherence because
previously it has been shown that the perceived burden of
illness has an impact on compliance and CF treatment ad-
herence [30]. Further studies should examine the reasons for the
better life satisfaction outcomes in participants living in a
partnership in more detail. In doing so, societal pressure and
reproductive issues should be addressed in particular.
The options of engaging in partnerships and family planning
have nowadays become real for a majority of individuals with
CF and should be considered at developmental stages when the
patients' health is still relatively stable. Thus it is indicated to
address gender-specific reproduction issues in patient education
when these issues become relevant. This requires a sense of
anticipatory guidance of patients with CF by the treatment team.
Especially for males with CF, who seem to be disadvantaged in
terms of partnership and reproduction issues, the opportunities
of engaging in a partnership and of utilizing the available arti-
ficial reproduction techniques to compensate their frequent
infertility might be relevant topics for patient counselling during
adolescence and early adulthood. This might also be an
important factor to improve the patients' adherence to available
treatment regimes, as they might add new long-time perspectives
to their lives and overcome negative expectations of their in-
dividual prognosis.
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