Socio-demographic and clinical characteristics of the sample
A total of 73 patients were enrolled in the study, with an average age of 56.9 years (sd=16.3; range 18-87 years), 55 were female (75.3%), with a female to male ratio of 3.1 2.39 . Most of the patients were married (n=49; 67.1%) and retired (n=39; 53.4%). Fourteen (19.2%) were receiving psychological support, and 15 (20.5%) were treated with psychotropic drugs (anxiolytic and/or antidepressant). At T0, only 4 patients declared a previous diagnosis of psychiatric disease, referring to mood disturbances for all of them.
Concerning the types of thyroid cancer, papillary subtype was the most frequent form (56.16%, n=41), followed by mixed tumor (20.6%, n=15), follicular (15.07%, n=11), medullary subtypes (5.5%, n=4; none of them was affected by Multiple Endocrine Neoplasia type 2, MEN2) and FT-UMP (Follicular Tumor of Uncertain Malignant Potential) (4.55%, n=2). All patients underwent total thyroidectomy (only one patient suffered from hypoparathyroidism), all of them were off-therapy and received cancer diagnosis on average 10.0 years (sd=4.63) before their enrollment in the study. The mean follow-up duration was 7.97 years (sd=4.65).
Depending on the time passed from the end of the curative cancer-related treatments, subjects were divided into three sub-groups: 0-5 years (25 patients, 34.3 %), 5-10 years (28 patients, 38.3 %) and >10 years (20 patients, 27.4%) (Table 1).
T0. Prevalence of distress, anxiety, depression and unmet needs at enrollment
The mean score at DT was 6.4 (sd = 0.9), with 76.7% of the sample (n=56) above the cut-off score. As for the DT problem list, most of the patients (67.1%, n=49) reported emotional problems (depression, fear, nervousness, sadness, worry and loss of interest in their usual activities). Physical problems were reported by 24.7% (n=18), practical problems by 13.7% (n=10), relational problems by 20.5% (n=15), while spiritual/religious concerns were experienced by 12.3% (n=9) of the sample.
On the HADS, the sample’s mean scores for anxiety and depression were 6.8 (sd= 4.1) and 5.3 (sd =3.5), respectively. Levels of anxiety above the cut-off value were reported by 46.4% of participants (n=34), while levels of depression above the cut-off were reported by 30.1% of patients (n=21). Sixteen patients (21.9%) had both anxiety and depression scores above the cut-off. HADS scores were not associated with the psychological support and the use of psychotropic drugs.
In SCNS-SF 34, 32 patients (43.8%) did not report unmet needs in the psychological domain, 4 patients (5.5%) reported already satisfied needs, whereas the remaining 50.7% (n=37) had unmet needs. Of these, 35% (n=13) had mild, 41% (n=15) moderate, and 24% (n=9) severe needs. Most patients reported satisfied needs in the communicative/information area (79.5%, n=58) and in the social care/health care area (74%, n=54). Only 4.1% of patients (n=3) were not satisfied by the communicative/information aspects received during the treatments and only one patient (1.4%) reported unmet needs in the social care/healthcare area. The other participants had no needs in these areas. Twenty patients (27.4%) experienced unmet needs in relation to physical condition/daily life domain. Nineteen patients (26%) reported unmet needs in the sexuality area (Table 2).
DT, HADS and SCNS-SF34 scores were not associated with the years which had passed from the end of the treatments, except for the “communicative/informative” area of SCNS-SF 34 (c2=9.6, p≤.05), which showed different percentages among the three sub-groups. In detail, 32% (n=8) of subjects of the 0-5 years group had no needs, compared to 7.1% (n=2) in the 5-10 years, and 10% (n=2) in the >10 years group. Furthermore, 60% (n=15) of the 0-5 years group reported satisfied needs, while this percentage increased to 92.9% (n=26) in the 5-10 years group, and to 85% (n=17) in the >10 years group. (Table 3).
T1. Participants' distress, anxiety, depression and unmet needs after one year
One year after the first evaluation the average score on the DT scale was to 5.5 (sd=3.1), and 81.8% of participants (n=34) were above the cut-off.
On HADS, the average score for anxiety decreased to 4.8 (sd= 4.1), with 10 (22.7%) patients above the cut-off. The average score for depression remained almost unchanged at 5.1 (sd= 4.3), with 10 patients (22.7%) above the cut-off. Twelve patients (27.3%) were above the cut-off for both anxiety and depression. No significant differences emerged in HADS mean scores between patients who had completed T0 and T1 evaluations and patients who had completed only T0 evaluation.
In SCNS-SF34 scores, 20 patients (45.5%) did not report unmet needs related to psychological domain and 2 patients (4.5%) were already satisfied. Twenty-two patients (50%) still had unmet needs in the psychological area, with 8 (36.4%) reporting mild, 9 (40.9%) moderate, and 5 (22.7%) severe needs. The communicative/ informative area reported satisfied needs by almost the entire sample (n=34, 77.3%) with only 2 patients (4.5%) still presenting unmet needs, while 8 patients (18.2%) did not feel this need. Similarly, 33 patients (75%) had satisfied needs in the social care/health care domain, with only 1 patient (2.3%) still unsatisfied; 10 participants (22.7%) did not report needs among this area. Regarding the physical/everyday life domain, 11 patients (25%) reported unmet needs, and 11 participants (25%) reported unmet needs related to the sexuality area (Table 2). No significant differences emerged in SCNS-SF34 scores between patients who completed T0 and T1 evaluations and patients who completed only the T0 evaluation.
Regarding the occurrence of life events between T0 and T1, the most experienced stressing events concerned the working area (n=24; 54.5%), the family area (n=11; 25%), the mourning area (n=10; 22.7%) and the health area (n=10, 22.7%).
As for the working area, 17 patients out of 24 (70.8%) reported a negative impact on their lives, and 5 (20.8%) considered the event as likely/almost certainly resulting from the illness.
As for the familial area, 6 patients out of 11 (54.5%) reported a negative impact on daily life, while 2 (18.2%) felt these events as closely related to the illness. As for the mourning area, 9 patients out of 10 (90%) reported a negative impact on daily life with no relation to their illness. As for the health area, 8 patients out of 10 (80%) reported a negative impact on their lives and 2 (20%) considered the event related to the illness.
Comparing DT, HADS and SCNS-SF34 scores between T0 and T1, the DT mean score significantly decreased between T0 and T1 (F = 4.9, p ≤ .01). The intra-group effect was mediated by occupation: the mean score did not fall for retired patients. Relational, emotional, spiritual and physical problems did not change from T0 to T1, whereas practical problems significantly decreased between T0 and T1 with a mediation effect of the time since the end of the treatments: the reduction was higher for patients between 5 and 10 years since the end of the treatments (.6 vs .2).
The HADS anxiety mean score was significantly different between T0 and T1 (F = 11.5; p ≤01), with a decrease of the average anxiety scores. This result was mediated by occupation: in retired patients the HADS anxiety mean score increased for retired patients (+.58 vs -2), whereas, HADS depression mean score did not change significantly over time. At the SCNS-SF34, no significant differences emerged in unmet needs between T0 and T1 (Table 2).
Finally, no associations were found between the DT, HADS and SCNS-SF34 scores and experienced life events.