Results
Demographics and medical
data
50 adolescents with CF (aged 12–17 years) and parents of 132 CF
patients aged 0 - 17 (94 mother and 48 father) were asked and all agreed
to participate in the study. Patients’ characteristics are presented in
Table 1.
Prevalence of anxious and depressive symptoms in adolescent
CF patients (aged 12-17)
(N=50)
The mean scores of 50 patients aged 12-17 years old were 7.71 ± 4.85 for
PHQ-9 and 5.55 ± 3.83 for GAD-7. PHQ-9 scores showed nearly ¼ of
patients (25.5%) had moderate to severe depression. Anxiety symptoms
were less frequent than the depressive symptoms with no patients
reporting severe anxiety and 17.6% reporting moderate anxiety (Table
2).
Additionally, there was a significant correlation between depression
(PHQ-9) and anxiety (GAD-7) scores in adolescent patients (r = 0.655 p =
0.000)
Prevalence of anxious and depressive symptoms in parents of
CF
patients
The mean scores of both depression and anxiety were higher in mothers
compared to fathers (p < 0.05 ). The mean PHQ-9 scores
were 7.99 ± 4.65 in mothers and 5.73 ± 3.66 in fathers, while GAD-7
scores were 6.60 ± 4.42 and 4.09 ± 3.63, respectively. Results of the
questionnaires show 33.7% of mothers and 14.6% of fathers had moderate
to severe depression. Moreover, 21.8% of mothers and 8.5% of fathers
had moderate to severe anxiety (Table 2). There were statistically
significant correlations between PHQ-9 and GAD-7 scores in both mothers
(r = 0.734 p = 0.000) and fathers (r = 0.706 p = 0.000).
Determinants of depression and anxiety in adolescent CF
patients
There was no difference in depression and anxiety scores between male
and female patients. Having comorbidities (CF related diabetes mellitus
(CFRD), hepatobiliary disease, BiPAP or oxygen use, pancreatic
insufficiency and/or allergic bronchopulmonary aspergillosis (ABPA) did
not show any statistically significant difference in depression or
anxiety scores (p > 0.05).
Patients’ age, age at diagnosis, BMI z-score, disease severity, number
of hospitalization and exacerbations in the last year and FEV1%
predicted was not significantly correlated with anxiety or depression (p
> 0.05) (Table 3).
Chronic pulmonary infection with Pseudomonas aeruginosa (Pa) or
Methicillin-resistant Staphylococcus Aureus (MRSA) were not associated
with depression or anxiety in this patient group (p >
0.05). Table 3 presents the Spearman’s rho correlation coefficients.
Determinants of depression and anxiety in parents of CF
patients
Gender, age, BMI z-score, age at diagnosis, disease severity, FEV1%
predicted and number of exacerbations in the last year did not show any
difference in depression and anxiety of parents (Table 3). Additionally,
having comorbid disorders such as CFRD, hepatobiliary disorder, ABPA,
pancreatic insufficiency and BiPAP or oxygen use were not significantly
different (p > 0.05). However, the results show a
statistically higher anxiety score (GAD-7) in mothers of patients with
chronic MRSA infection (p = 0.034). Moderate to severe anxiety
rates were 46.2% and 17.8% in mothers of patients with and without
chronic MRSA infection, respectively. Further analysis of the patients
with chronic MRSA infection, number of exacerbations in the last year (p
= 0.046) and number of hospitalizations in the last year (p = 0.012)
were statistically higher compared to patients without chronic MRSA
infection. On the other hand, while FEV1 was lower in the group with
chronic MRSA infection, it was not statistically significant (p =
0.385). Moreover, fathers of patients who had hospitalized at least once
in the last year had higher levels of depression in results of PHQ-9
(U = 190.5, p = 0.043).
Patients’ adherence with medical treatment and airway
clearance
adherence
There was no significant association found between patient’s adherence
to medical treatment/airway clearance and PHQ-9 or GAD-7 scores of
patients and fathers. There was a significant difference between both
PHQ-9 (p = 0.002) and GAD-7 (p = 0.002) scores of mothers and patient
adherence. In both, test scores were significantly higher in
non-adherent group, meaning worse depression and anxiety symptoms.
Figure 1 and Figure 2 shows the distributions and mean ranks of each
group.
Discussion
Recent studies show significant increase in symptoms of depression and
anxiety among CF patients and parent caregivers worldwide. Latest
guidelines on CF care recommend screening of depression and anxiety
symptoms in routine care of the patients 4; 9; 14.
This study aimed to determine the prevalence of depression/anxiety and
possible risk factors in a single CF Center. To the best of our
knowledge, this is the first study evaluating the prevalence of
depression and anxiety in CF by using PHQ-9 and GAD-7 in Turkey. The
present findings show a high prevalence of depression and anxiety in
both adolescent CF patients and parents of CF patients.
Our data showed that quarter of the adolescent CF patients (25.5%) had
moderate to severe depression. The largest international screening study
(TIDES) reported depression among adolescents between 5-19%. A
cross-sectional study conducted in Turkey compared depression and
anxiety in 35 CF patients and 40 healthy control group by the Child
Depression Inventory (CDI) and the State-Trait Anxiety Inventories for
Children (STAI-C) 15. In this study, Senses-Dinc et
al. have found that the depression and anxiety symptom levels were
significantly greater and the quality of life scores were significantly
lower in CF than the healthy controls 15. Another
study on Turkish CF patients demonstrated that the individuals with CF
who were diagnosed with major depression (measured by CDI) outnumbered
those in control group (21.9% vs 6.1%), although the difference was
not statistically significant 16.
According to TIDES study, 22% of adolescent CF patients had elevated
symptoms of anxiety. Our data showed moderate to severe anxiety in more
than one-sixth (17,6%) of patients. Gundogdu et al. reported 46.9% vs
15.2% general anxiety disorder in CF and control groups respectively,
however when they compared the subgroups of anxiety disorders, the
differences between the groups reached statistical significance only for
specific phobia (related to medical procedures, such as the placement of
feeding tubes and the insertion of central catheters)16.
None of the predictors such as BMI z-score, age at diagnosis, disease
severity, FEV1% predicted and number of exacerbations in the last year
studied in this research was associated with different rates of
depression or anxiety in adolescent patients. Quittner et al. published
the following characteristics associated with increased symptoms of
depression: being female, an episode of hemoptysis/pneumothorax in past
6 months, taking psychiatric medication for depression or anxiety and
receiving psychotherapy for depression or anxiety and these associated
with elevated anxiety: being female, recently on IV antibiotics and
receiving psychotherapy 4. Another study evaluating
prevalence of symptoms of depression and anxiety reported in multiple
linear regression analysis, only FEV1% predicted was independently
associated with PHQ-9 depression scores, and no sociodemographic or
clinical factors were associated with GAD-7 anxiety scores17.
In our study, both depression (33.7% vs. 14.6%) and anxiety (21.8%
vs. 8.5%) were much higher in mothers than fathers. Similarly, in a
study among Italian population, mothers were more anxious than fathers
(23.8% vs. 12.3%) and much more depressed than fathers (8.7% vs.
2.8%) 18. The cultural similarities between these
countries resulting in the mothers being the primary caregiver of CF
patients and increased stress due to the caregiver burden might be the
cause of higher depression and anxiety levels in mothers in both
countries.
Although presence of chronic MRSA infection and recent hospital
admission was associated with parental depression and anxiety, similar
association was not found for pulmonary function test parameters.
Catastini et al.18 interpreted this as, the worsening
of pulmonary function indicators (FEV1 and FVC) does not seem to affect
the emotional state of the parents, who probably experienced the
symbolic value of the worsening of the disease (use of therapies) more
than the real clinical deterioration. In our study, chronic MRSA
infection was associated with higher anxiety levels in mothers and the
increased number of hospitalization and exacerbation in this group might
be the possible causes.
Moreover, recent hospital admission was associated with increased
depression in fathers. One possible reason might be the increased
responsibilities on fathers during hospitalization (household tasks and
care of other children etc.) because as mothers being the primary
caregiver of CF patients in Turkey, most of the time they stay at the
hospital during admission.
Smith et al, in contrast to our study, reported positive correlations
between maternal depressive symptoms and adherence 19.
Our data revealed that maternal depressive symptoms associated with
worse adherence to treatment. Physical and mental health of caregivers
are critically important in the care of children with chronic illnesses.
Mothers are the main caregiver of children with CF in our country and
depression of the mothers may result in non-adherence to
medications/airway clearance methods. Quittner et
al.20 also showed that caregiver depression was
negatively associated with adherence to pancreatic enzyme use, with
depressed caregivers demonstrating lower rates of adherence which
resulted in changes in weight of patients.
To the best of our knowledge, before the TIDES study there was not any
guidelines on screening of caregivers. ICMH recommended offering annual
screening for depression and anxiety to at least one primary caregiver
of children and adolescents with CF 9. The problems
related to treatment adherence might cause deterioration in patients’
clinical status. This shows great importance of parental screening
rather than only the children. Our findings support the possible
positive outcomes of parental screening and intervention according to
results.
The present study is the first study evaluating depression and anxiety
in Turkish adolescent CF patients and parent caregivers by using the
assessment tools recommended by CFF and ECFS.
This study has some limitations. One of the most important limitation of
the study is the small sample size. Secondly, socioeconomic determinants
were not included in the study design which might be predictors of
depression and anxiety. Adherence was not measured objectively, rather
assessed by patient/parent self-reports. During the study period, the
patients and parents with increased symptoms of anxiety and/or
depression were referred to child psychiatrist. These patients were
treated or followed up by the specialists according to the guidelines.
We hope that these interventions would be helpful to increase
psychological wellbeing and adherence to treatment protocol eventually.
In conclusion, symptoms of depression and anxiety are higher than normal
population in both CF patients and their caregivers. Our study found
that chronic MRSA infection and hospitalization in the last twelve
months are associated with elevated psychological difficulties in
parents of patients. Moreover, elevated depressive symptoms in mothers
are negatively correlated with adherence to airway clearance in
patients. Therefore, it is greatly important to screen the symptoms of
depression/anxiety in both CF patients and their caregivers and
intervene accordingly.