4.1 Baseline demographic, medical, and psychological data
Demographic Information . Sixteen adolescents/young adults (9 female, 7 male), ages 12 to 36 years and 14 parents, ages 26 to 49 years (13 mothers, 1 father) agreed to participate (Table 1). All pwCF and parents completed the measures (100%). A majority of pwCF were in secondary school. Most parents were unemployed (46%), some worked from home, and some were furloughed.
Clinical and Psychological Characteristics . Average lung function (FEV1%) was 67%, average BMI was 22, and 81% were pancreatic insufficient (Table 2). At baseline, average stress ratings were fairly high: 7.1 for pwCF and 7.8 for parents out of 10 points (Table 3). A large percentage of participants in both groups scored in the clinically elevated range on the screening measures (scores> of 5) prior to the intervention. Mean score on the PHQ-8 was 8.0 for pwCF and 6.4 for parents, respectively. Mean score on the GAD-7 was 6.9 for pwCF and 8.1 for parents, respectively. Among patients, 71% scored in the elevated range on bothdepression and anxiety, with most in the mild-moderate range. Among parents, 57% scored in the elevated range of depression, with most reporting mild-moderate severity, and 79% scored in the elevated range for anxiety, with 45% scoring in the moderate-severe range (Table 3).
4.2 Intervention Results: People with CF . Results demonstrated statistically significant reductions in stress for pwCF: 7.1 at the pre-test to 4.9 at the post-test (paired t -test,t (15) = 4.1, p<.01 ). Significant reductions in depression were also found; from 8.0 at the pre-test to 4.7 at the post-test (paired t -test, t (15) = 2.8,p<.05 ). Symptoms of anxiety also decreased, 6.9 at pre to 5.6 at post-test, but was not statistically significant (pairedt -test, t (15) = 1.2, p=NS; Figure 2).
Changes in symptoms of depression . Next, categorical changes from pre to post-testing were analyzed. At baseline, 25% of pwCF had no symptoms of depression, 31% were mild, 37.5% moderate and 6.3% severe (Table 3). Overall, most pwCF remained stable from pre to post-testing (56%), 37.5% of pwCF reported decreases in depression and 1 individual reported worse symptoms (6%). Specifically, 6 pwCF improved, 1 person with CF worsened, and 9 remained stable (Table 3). For those in the mild range (n =5), all remained mild. The most dramatic changes were observed in 3 pwCF who were moderate at pre and dropped into the no symptoms category, followed by 2 pwCF who were moderate but dropped into the mild category. The person who worsened reported no symptoms at pre-testing but had a 1-point increase at post-testing in mild range.
Changes in symptoms of anxiety . Categorical changes were also analyzed for anxiety. At baseline, 25% of pwCF had no symptoms, 56.2% were mild, 12.5% moderate, and 6.3% severe (Table 3). Overall, most pwCF remained stable (n =11; 79%), 25% (n =4) reporteddecreases anxiety and 1 person (6.3%) reported no symptoms at pretesting, but reported mild symptoms at post-testing. For those who were mild at pretesting (n =9), all remained mild. Although stability or improvements were observed in most pwCF, changes in anxiety were less dramatic.
Given that the minimal clinically important difference score for these measures is 5 points, the next analysis examined the percentage of pwCF who made clinically significant improvements. More than one-third of the sample (37%; n =6) reported a clinically meaningful improvement in depression and 17% (n =3) reported meaningful changes in anxiety.
4.3 Intervention Results: Parents Caregivers. Similar results emerged for parents. Statistically significant decreases were found in stress ratings, 7.8 at the pre-test to 5.7 at post-testing (paired t -test, t (13) = 5.2, p<.001 ). Significant reductions were also found for depression, 6.4 at pre to 5.1 at post-test (paired t -test, t (13) = -2.5,p<.05 ), In contrast, symptoms of anxiety decreased from 8.1 to 7.9, but were not statistically significant (pairedt -test, t (13) = -0.2, p=NS; Figure 2).
Changes in symptoms of depression . Next, categorical changes in scores from pre to post-testing were analyzed. At baseline, 42.8% of caregivers had no symptoms of depression, 28.6% were mild, 28.6% moderate, and no parents reported severe symptoms (Table 3). Overall, most caregivers remained stable from pre to post (64.2%), however, 21.4% (n =3) of parents reported decreases in depression and 2 reported worse symptoms (14.3%). The most dramatic changes were observed in 3 caregivers who reported moderate symptoms at pre and dropped into the mild category at post. In addition, 3 parents (21.4%) who were mild remained mild. For the two parents who worsened, 1 moved from mild to moderate and 1 reported no symptoms at pre and mild symptoms at the post-testing.
Changes in symptoms of anxiety . Categorical changes were also analyzed for anxiety. At baseline, 21.4% of caregivers reported no symptoms of anxiety, 35.7% reported mild symptoms, 28.6% were moderate and 14.3% reported severe symptoms (Table 3). Most parents remained stable (n =7; 50%), however, 28.6% (n =4) reporteddecreases in anxiety and 3 parents (21.4%) reported worsening of anxiety at the post-testing. Six parents were stable; 3 remained mild and 3 moderate. Two parents made dramatic improvements, reporting severe symptoms at pre and mild symptoms at post-testing (14.3%).
The next analysis examined the percentage of parents who made a clinically significant improvement. One parent (7%) reported a clinically meaningful improvement in depressive symptoms and two parents reported clinically meaningful improvements in anxiety (13%).