Psychological distress and desire for professional support in gynecological cancer patients in an outpatient university setting

doi:10.21203/rs.3.rs-1963024/v1

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Psychological distress and desire for professional support in gynecological cancer patients in an outpatient university setting

https://doi.org/10.21203/rs.3.rs-1963024/v1

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Purpose Psychological distress affects many cancer patients; however, gynecological cancer patients face unique challenges. We therefore assessed the level of psychological distress and desire for psychosocial support as well as potential determinants of distress levels in 355 gynecological cancer outpatients.

Methods Psychological distress was assessed by analyzing data from routine distress screening using the 10-item self-reporting Questionnaire on Stress in Cancer Patients – short form (QSC-R10). A question regarding their desire for psychosocial support was added. First time screenings completed from 11/2013 to 04/2018 were included (N = 355). We investigated prevalences regarding elevated distress and desire for support. Additionally, a multiple linear regression analysis regarding determinants of distress was calculated.

Results At the time of data collection, 39.5% showed elevated levels of psychological distress. Overall, 9.9% indicated a desire for support. 7.1% of the patients with little or no distress indicated a desire for support, whereas 18.2% did so of patients with high distress. Younger age, shorter illness duration, a desire for support and progression of disease were significant determinants regarding elevated distress.

Conclusion Regarding distress, particular attention needs to be payed to younger cancer patients, those with shorter illness duration or disease progression and patients expressing a subjective need for support. Distressed patients are more likely to express a desire for support; however, some objectively less distressed patients also indicated that desire. Future investigations should explore ways to improve psychosocial care offers for patients in need and focus on the discrepancy between normative and subjective needs for psychosocial support.

Distress screening

Gynecology

Psycho-oncology

Ovarian cancer

Endometrial cancer

In a sample of gynecological cancer outpatients, a considerable portion of 39.5% of the patients showed elevated levels of distress and 9.9% indicated a desire for support. While screening-identified and subjective needs showed a clear discrepancy, patients who have a desire for psychosocial support, younger patients, those with a shorter duration of illness and those experiencing a recurrence or progression of disease seem to require particular attention regarding psychological distress.

A diagnosis of cancer and the associated treatment often lead to significant psychosocial burdens for patients and caregivers. Patients therefore often suffer from subsyndromal challenges including fear of disease progression, depressive symptoms and psychosocial distress [1–4]. A key term in this context is “distress” which is associated with numerous negative outcomes; one of them being a lower quality of life [5]. Additionally, determinants such as distress, depression and depressive symptoms are associated with lower patient satisfaction [6] and can affect both compliance [7] and mortality [8]. Negative emotions have also shown to negatively impact medical decision-making [9]. Therefore, timely identification of those in need and adequate care of vulnerable patients are of high importance.

To address this, routine screening for psychological distress and appropriate care when needed has become standard practice both internationally and in German Gynecological Cancer Centers [10] and is also recommended by German guidelines [1, 11]. The S3-guideline recommendation is to screen each patient initially and, if appropriate, repeatedly during the course of the disease with regard to their psychological distress and to inquire about their desire for psychosocial support [1]. For this purpose, the “Questionnaire on Distress in Cancer Patients – short form” (QSC-R10) [12], among others, is recommended. In this context, the proportion of patients who express a desire has been described to be around 20–40% [13–17] and does not necessarily coincide with the objective need [13, 16, 18]. The prevalence of distress is commonly found to be in the range of 30–60%, depending on the study population and measuring method [15, 16, 19–24]. A variety of determinants are described in the literature, including sociodemographic and tumor-specific factors as well as disease or treatment phase [2, 19–21, 23–30]. Women appear to be particularly at risk in this regard, which is relevant to gynecological oncology [17, 20–23]. For gynecological cancers, data regarding prevalence of distress are very heterogeneous. [24, 26, 29, 31]. Some authors described highest [21] or lowest [19] distress levels amongst all entities studied, indicating a need for further clarification. Additionally, these diseases often pose a particular challenge to the women affected, concerning many sensitive areas such as the hormonal system, sexuality, reproductive capacity and ultimately a part of the female identity [32, 33]. With outpatient/follow-up care often extending for many years, the aim of the present study was to assess the prevalence of psychological distress in gynecological cancer outpatients, their desire for psychosocial support and potential determinants of distress levels using a cancer-specific screening tool.

Data collection

The analysis included data retrieved from routine distress screening collected between 11/2013 and 04/2018 in the outpatient clinic of the Department of Gynecology, Technical University of Munich, Germany. The screening was performed as a paper-pencil screening or electronically prior to the physician’s consultation. It aimed to reach all patients with a confirmed cancer diagnosis. Nonparticipation due to refusal or other reasons was documented in the form of a blank questionnaire. Psychosocial support was offered if the cut-off for significant distress was exceeded, or if patients had a desire for support. For better comparability, only the first screening of each patient was analyzed and follow-ups were excluded. The first data collection was not linked to a specific event or a fixed point in time. Medical information was obtained retrospectively from the patient records and those patients diagnosed with a gynecological malignancy were included. Patients with a second predominant malignancy were excluded if the diagnosis of the gynecological malignancy was > 15 years prior to the survey without indication for interim disease activity.

Measures

For routine distress screening, the 10-item self-reporting QSC-R10 [12] was used. Using this instrument, patients are asked to rate ten potentially stressful situations according to relevance (“Not applicable” = 0 or “Applies to me”) and, if applicable, according to severity (“Applies to me and is a slight problem” = 1 to “Applies to me and is a very serious problem” = 5) on a five-point scale. This results in a total score reaching values between 0 and 50 points. A cut-off score > 14 is considered indicative of a need for psychosocial support. Additionally, a question regarding patient’s desire for psychosocial support was added. Three different formulations were used, that varied between patients (see Appendix A).

Variables

Variables that related to the process of screening were date of completion, survey type (paper vs. electronic screening), the 10 individual items of the QSC-R10 (each ranging from 0 to 5), the item on desire for counselling (yes/no), the QSC-R10 total score (0 to 50), and prevalence of increased psychological distress (cut-off score > 14 yes/no). Demographic and medical variables included date of birth, number of cancer diagnoses, current leading malignancy, its tumor entity, date of initial diagnosis, tumor stage (UICC [Union for International Cancer Control] / FIGO [International Federation of Gynecology and Obstetrics]), number of recurrences, tumor manifestation after recurrence, disease progression and treatment phase. For details on which criteria were used to collect the variables, see Appendix B.

Statistical analysis

The statistical analysis was performed using the statistical program IBM SPSS Statistics for Windows, version 26.0. Tables were created using SPSS and Microsoft Word 2010. All available data were used and missing values were indicated. Results were statistically significant at p ≤ 0.05.

In accordance with clinical practice, incomplete questionnaires were included under the assumption that a missing indication for one to nine items is equivalent to a lack of relevance and thus to an indication of 0 for the patient in question. Entirely blank questionnaires were excluded from further analysis.

Absolute and relative frequencies were calculated for the descriptive evaluation of categorical variables. For metric variables, the mean (M) with standard deviation (SD) and minimum/maximum were reported. Variables that were continuous and relevant for further analysis were visually examined for normal distribution using histograms. A slightly skewed distribution was considered acceptable given the size of the available sample. Group differences regarding the desire for support between patients indicating high versus low levels of distress were analyzed using a cross table and chi-square-test. Determinants of distress were investigated using multiple linear regression analysis (forced entry). Dummy variables were created where necessary. The conditions required to perform linear regression analysis were tested and met. This included a test for multicollinearity by examining the variance inflation factors (VIF values) and, for values greater than 6, a correlation matrix, where a correlation > 0.85 was considered indicative of multicollinearity. The variable number of recurrences had to be excluded due to collinearity. Reported are standardized (beta) and unstandardized coefficients (regression coefficient B [including confidence intervals for significant variables], standard error), p-values and R² as well as adjusted R² of the model.

Sample characteristics

355 patients participated in the distress screening during the specified period. The mean patient age was 60.4 years (SD = 13.3), with a range between 25 and 89 years. The mean illness duration was 3.5 years (41.9 months, SD = 57.2). According to the evaluations of the patient registry, at least 924 patients with gynecological cancers had an appointment at the outpatient clinic during the study period, thus approximately 38.4% of these patients were covered by the screening at least once. The highest number of initial examinations was collected in 2014, accounting for 45.4% (n = 161) of all examinations considered. The majority of 85.9% (n = 305) were recorded in the form of a paper-pencil screening. Complete responses regarding the QSC-R10 were available for 72.4% (n = 257); in 21.7% (n = 77) of the cases, information was missing for one to nine items and 21 questionnaires (5.9%) remained blank. Ovarian cancer represented the most common diagnosis (54.6%, n = 194). Overall, advanced disease (FIGO/UICC stage III) was diagnosed most frequently (46.2%, n = 164). In 64.2% (n = 228) of the cases, no recurrence of the disease had yet been detected. In those patients who were diagnosed with a recurrence (35.8%, n = 127), the majority were found to have distant metastases (59.1%, n = 75). However, in terms of disease progression, about half of the patients (49.9%, n = 177) were in complete remission at the time of the survey and 58.6% (n = 208) were in follow-up. For more detailed information regarding the screening and patient characteristics see Table 1.

Prevalence of distress and desire for support

Regarding distress levels, 39.5% (n = 132, percentage based on the 334 evaluable screenings) showed evidence of increased psychological distress while 60.5% (n = 202) had a total score ≤ 14, corresponding to little or no distress. Of the total 355 patients, the majority of 76.1% (n = 270) had no desire for psychosocial support, 9.9% (n = 35) expressed a need for support, and 14.1% (n = 50) did not specify. As shown in Table 2, fear of progression was the strongest burden for the patients surveyed.

Table 1

Descriptive statistics regarding the screening and patient characteristics (N = 355)

		n	%
Year of completion
	2013	26	7.3
	2014	161	45.4
	2015	69	19.4
	2016	38	10.7
	2017	57	16.1
	2018	4	1.1
Type of survey
	Paper-pencil	305	85.9
	Electronic	50	14.1
Missing items in QSC-R10
	None	257	72.4
	One item	45	12.7
	Two items	18	5.1
	Three items	9	2.5
	Four to nine items	5	1.5
	No indication	21	5.9
Number of cancer diagnoses
	One	303	85.4
	Two	43	12.1
	Three	9	2.5
Leading tumor entity
	Ovarian	194	54.6
	Endometrial	56	15.8
	Cervical	37	10.4
	Vulvar, other gynecological	52	14.6
	Breast, other non-gynecological	16	4.5
Stage (FIGO/UICC)
	I	89	25.1
	II	32	9.0
	III	164	46.2
	IV	57	16.1
	No data	13	3.7
Recurrences
	None	228	64.2
	One	100	28.2
	Two	19	5.4
	Three	7	2.0
	Four or more	1	0.3
Tumor manifestation after recurrence
	None	228	64.2
	Local recurrence	26	7.3
	Lymph node	26	7.3
	Distant metastases	75	21.1
Disease progression
	Complete remission	177	49.9
	Suspect findings	29	8.2
	Partial remission / no change	50	14.1
	Progressive disease	34	9.6
	Not (yet) evaluable	65	18.3
Treatment phase
	Bevacizumab	40	11.3
	Chemotherapy	47	13.2
	Follow-up	208	58.6
	Other	39	11.0
	Multiple	21	5.9
Distressed (n = 334)
	Yes	132	39.5
	No	202	60.5
Desire for support
	Yes	35	9.9
	No	270	76.1
	No indication	50	14.1
Age (years)
	M	60.4
	SD	13.3
	Minimum	25
	Maximum	89
Duration of illness (months)
	M	41.9
	SD	57.2
	Minimum	0
	Maximum	430
QSC-R10 total score
	M	12.9
	SD	9.9
	Minimum	0
	Maximum	45
Note. QSC-R10 = Questionnaire on Distress in Cancer Patients – short form (Book et al. 2011); FIGO = International Federation of Gynecology and Obstetrics; UICC = Union for International Cancer Control.

Table 2

Relevance of the individual items of the QSC-R10 (N = 355)

QSC-R10 Items	N		M	SD
QSC-R10 Items	valid	missing	M	SD
“I feel tired and weak.”	319	36	1.71	1.62
“I am in pain.”	327	28	1.15	1.403
“I feel physically imperfect.”	323	32	1.14	1.5
“I have too few opportunities to speak with a professional about my psychological distress.”	315	40	.72	1.368
“I am afraid that my disease will spread/recur.”	324	31	2.24	1.722
“It is difficult for my partner to empathize with my situation.”	301	54	.82	1.347
“My sleep is disturbed.”	328	27	1.48	1.593
“It is harder for me to take part in recreation activities (e.g. sports) now than it was before I became ill.”	315	40	1.75	1.844
“I do not feel well informed about my disease/treatment.”	319	36	.75	1.332
“I feel tense and/or nervous.”	326	29	1.69	1.594
Note. QSC-R10 = Questionnaire on Distress in Cancer Patients – short form (Book et al. 2011).

Group differences regarding desire for support

To examine group differences in terms of desire for support according to psychological distress, a cross table was created (Table 3). N = 305 cases were considered. In the group of patients who showed little or no distress according to the screening, 7.1% indicated a desire for support. Of those with increased distress, 18.2% did so. The chi-square test showed this group difference, chi-square (1) = 8.88, p = 0.003, phi = -0.17.

Table 3

Desire for psychosocial support according to psychological distress

			Increased psychological distress		Total
			No	Yes	Total
Desire for support	Yes	n	13	22	35
	Yes	%	7.1%	18.2%	11.5%
	No	n	171	99	270
	No	%	92.9%	81.8%	88.5%
Total		n	184	121	305
Total		%	100.0%	100.0%	100.0%
Note. 21 questionnaires remained blank. In another 29 questionnaires, no indication of the desire was given. QSC-R10 = Questionnaire on Distress in Cancer Patients – short form (Book et al. 2011). This table is part of the submitted dissertation “Psychological distress, desire for and use of psychosocial support in gynecological cancer patients – evaluation of the QSC-R10 distress screening”.

Determinants of psychological distress

Using multiple linear regression analysis, eight potential determinants of distress were evaluated. The number of recurrences was excluded due to collinearity. N = 294 cases were included in the analysis. There was no evidence of multicollinearity in the final model with variance inflation factor (VIF) values ranging from 1.08 to 3.31. R² of the model was 0.23 (adjusted R² = 0,17).

As shown in Table 4, both increasing age (B = -0.13, 95% CI [-0.21; -0.04], p = 0.003) and number of months passed since diagnosis (B = -0.05, 95% CI [-0.08; -0.02], p = 0.002) were associated with lower distress. Progression of disease (B = 5.09, 95-% CI [0.64; 9.54], p = 0.025) led to higher psychological distress compared to patients whose disease progression was not (yet) evaluable. Having a desire for psychosocial support was significantly associated with an increase in psychological distress when compared to patients who had no desire for support (B = 7.08, 95% CI [3.68; 10.49], p < 0.001) and was the strongest predictor of psychological distress in comparison (β = 0.23).

Table 4

Multiple linear regression analysis evaluating determinants of psychological distress (n = 294)

B	SE B	β	p
Constant	16.514	3.361		< .001
Age	− .127	.043	− .172	.003
Months since diagnosis	− .046	.015	− .199	.002
Tumor stage (FIGO/UICC) ^a
I	− .088	1.391	− .004	.950
II	-1.664	2.023	− .051	.411
III	Ref.
IV	1.063	1.564	.041	.497
Tumor entity ^a
Ovarian	Ref.
Endometrial	1.896	1.583	.072	.232
Cervix	.438	1.913	.014	.819
Vulva, other gynecological	2.849	1.682	.100	.091
Breast, other non-gynecological	− .152	2.840	− .003	.957
Tumor manifestation after progression ^a
None	Ref.
Local recurrence	2.266	2.484	.055	.363
Lymph node	2.862	2.515	.074	.256
Distant metastases	3.030	1.868	.129	.106
Disease progression ^a
Complete remission	1.062	1.882	.055	.573
Suspect findings	3.212	2.604	.087	.219
Partial remission / no change	3.589	1.999	.130	.074
Progressive disease	5.091	2.259	.164	.025
Not (yet) evaluable	Ref.
Treatment phase ^a
Bevacizumab	.956	1.934	.030	.621
Chemotherapy	3.918	1.995	.136	.051
Follow-up	Ref.
Other	3.428	1.979	.107	.084
Multiple	2.172	2.610	.052	.406
Desire for support ^a
yes	7.084	1.730	.228	< .001
no	Ref.
Note. Confidence interval = 95%; R² = 0.23. This table is part of the submitted dissertation “Psychological distress, desire for and use of psychosocial support in gynecological cancer patients – evaluation of the QSC-R10 distress screening”. QSC-R10 = Questionnaire on Distress in Cancer Patients – short form (Book et al. 2011); FIGO = International Federation of Gynecology and Obstetrics; UICC = Union for International Cancer Control.
^a Dummy-coded variables

The prevalence of psychological distress and desire for psychosocial support were assessed in 355 gynecological cancer outpatients, analyzing data of routine distress screening. Furthermore, the determinants of distress were examined to complement the limited and heterogeneous data on psychological distress in gynecological cancer patients.

In our sample, ovarian cancer was the most common diagnosis. Although many patients had an advanced disease and over one third had already experienced at least one recurrence, about half were in complete remission and nearly 60% were in follow-up. In accordance with previous studies describing a prevalence of distress of approximately 35–40% across tumor entities [15, 16, 19], 39.5% showed signs of increased psychological distress. Studies with outpatient-only collectives appear to show lower distress rates of about 20–30% [2, 29, 34]. Very heterogeneous data have been described for gynecological cancer patients. Zabora et al. reported the lowest burden among gynecological cancer patients compared with the other entities covered (29.6%) in a study of 58% newly diagnosed patients [19], while Mehnert et al. described the comparatively highest burden of 63.1% in a collective of mostly inpatients [21], similar to Johnson et al. who found 57% in gynecological cancer patients undergoing chemotherapy [24]. However, studies based on collectives of gynecological cancer outpatients more similar to ours, and in which the majority were in follow-up, yielded comparable proportions [26, 29, 31].

Regarding subjective need, 76.1% of patients reported not needing support while 9.9% expressed such a need. 14.1% did not specify a need, possibly because they were ambivalent, as argued by Tondorf et al. [35]. The literature frequently describes that only a comparatively small proportion of patients report a desire [13], the lower percentages being around 20% [15, 16, 36]. However, our study showed significant differences in terms of desire for support according to psychological distress, resulting in 7.1% indicating a desire for support in the group of patients with little or no distress vs. 18.2% of those with increased distress. Nonetheless, it still remains to be noted that the normative and the subjective needs differed widely here. Clover et al. and Pichler et al. explored this phenomenon and found that amongst others, psychological variables, a preference of self-management and the conviction that their level of distress does not require support seemed to play an important role [13, 18]. Tondorf et al. however, also found a group of patients who were undecided about a need for support. These patients barely made use of support offers despite increased psychological distress [35]. The high proportion of patients in our survey who did not specify their subjective need might reflect this group.

With regard to the burden of the potentially stressful situations queried, fear of disease progression had the highest relevance for the collective, followed by limitations in pursuing recreation activities and physical weakness. The particular significance of the fear of progression, especially in the context of long-term survivorship, is in accordance with previous research [4, 37] and has shown to be of particular relevance for gynecological cancer patients [38, 39]. Furthermore, it has been reported that limitations regarding physical functioning have a significant impact on distress [40]. In contrast, having too few opportunities to talk to a specialist about mental distress was perceived least relevant, followed by lack of information and difficulties in the partner’s empathy. This is in line with Herschbach et al., who also found these three items to be the least burdensome for the patients queried [37]. These findings reflect the patients’ perceptions that access to care and information is adequate, which is relevant considering that information-seeking also serves as a coping strategy [41]. The question regarding the partner’s empathy showed most missing values, indicating that this item did not adequately address many patients. Here we suggest a more inclusive wording not exclusively referring to the partner, but to the person closest to the respondent.

Lastly, we explored determinants of psychological distress. The multiple linear regression analysis suggested a relationship between the reported distress and the desire for support when compared to patients who had no desire. This is similar to what Buchhold et al. [15], Baker-Glenn et al. [36] and Faller et al. [17] described as well, while Merckaert et al. [42] did not find such association. Furthermore, it revealed that younger age, a shorter interval since diagnosis and experiencing a disease progression (as compared to patients whose disease progression was not [yet] evaluable) were significantly related to higher psychological distress. These determinants have also been found in previous studies considering other tumor entities. The effects of shorter illness duration/being newly diagnosed [30, 43], of critical events like a progression [44] and younger age [17, 19, 20, 23, 24, 29, 43] were frequently described. However, the effect of time elapsed since diagnosis seems more complex and cannot be generalized. Here, we refer to recent studies that have shown that the course of psychological distress is very individual and that, in addition to groups in which the burden decreases or remains stable, there is sometimes also an increase or persistence of distress [45–48]. Therefore, and considering that especially women and patients with gynecological malignancies have shown to be prone to continuously experiencing high distress [23], repeated questioning during the course seems crucial.

Our screening realistically represents the implementation of a screening tool in everyday clinical practice using a retrospective approach. This resulted in a considerable number of missing values and variations regarding the timing of the screening and the question about desire. This may have caused limited comparability within our study. Regarding the missing values, we decided to take an approach as close as possible to clinical reality. This implies that each questionnaire with an indication for at least one item was evaluated and it had to be assumed that the other items had no relevance to the patient. We also opted for this approach to not consistently exclude a subset of women who may feel burdened by only one given situation. Furthermore, screening methods included electronic and paper-pencil methods, that can, however, be considered equivalent in terms of results [49]. The interviews took place before the physician’s consultation; contents of the subsequent appointment were therefore not yet reflected in the screening but were the source of other variables, possibly resulting in a bias due to different levels of information. Overall, although we were able to screen a large number of patients, only about 38.4% of all patients targeted were reached. Here, the goal should be to capture more and ultimately all patients in the future. General limitations of our study result from limited direct comparability with other screening studies due to the infrequent use of the QSC-R10 and lack of screenings that meet the requirement to be cancer-specific.

With 39.5%, a relevant proportion of patients showed signs of increased psychological distress. In clear discrepancy, only 9.9% had a desire for support. However, 18.2% in the group of patients with increased distress indicated a desire, and having such desire was also significantly associated with a higher level of psychological distress. Additionally, younger gynecological cancer patients, those with a shorter duration of illness and those experiencing recurrence or progression of disease seem to require particular attention regarding psychological distress. In conclusion, future investigations should explore ways to improve psychosocial care offers for these patients and focus on the obvious discrepancy between normative and subjective need for psychosocial support. We recommend that the reasons for the high rejection rates be examined in light of the unique circumstances of gynecological cancer patients and that ways be explored to make the psychosocial interventions that have shown to be effective more accessible.

Author Contribution

K Rudolph: Project development, Data collection and management, Data analysis, Manuscript writing of the original draft/editing

CE Brambs: Manuscript editing, Project administration and supervision

M Kiechle: Manuscript editing, Project administration and supervision

A Nest: Data collection and management, Manuscript editing

T Pichler: Data collection and management, Manuscript editing

D Paepke: Project development, Manuscript editing, Project administration and supervision

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Competing interests

Prof. Dr. Marion Kiechle stated the following COIs:
Renumeration: Springer Press, Biermann Press, Celgene, Astra Zeneca, Myriad Genetics, TEVA, Eli Lilly, GSK.
Consultant/advisory role: Myriad Genetics, Bavarian KVB, DKMS Life, BLAEK, TEVA, Exeltis.
Equity owner: Therawis Diagnostic GmbH, AIM GmbH.
Funding: Sphingotec, Deutsche Krebshilfe, DFG, Senator Roesner Foundation, Dr. Pommer-Jung Foundation, Waltraut Bergmann Foundation, Bavarian State Ministry of Economy, BMBF, Innovation Fond GBA.

The other authors did not disclose any relevant financial or non-financial interests.

Ethics approval

The study was granted approval by the Ethics Commission of the Technical University of Munich, Germany (reference number 2022-305-S-NP).

Consent to participate

Due to the retrospective character of the study, informed consent was waived. The study was designed in accordance with the Declaration of Helsinki.

Consent for publication

All authors provided written consent to publish before publication.

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Psychological distress and desire for professional support in gynecological cancer patients in an outpatient university setting

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Abstract

What Does This Study Add To The Clinical Work?

Introduction

Methods

Data collection

Measures

Variables

Statistical analysis

Results

Sample characteristics

Prevalence of distress and desire for support

Group differences regarding desire for support

Determinants of psychological distress

Discussion

Limitations

Conclusions And Clinical Implications

Declarations

References

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