Patients' perceived challenges, competencies, and supportive care needs during acute clinical treatment of breast or gynecological cancer

This study aimed to examine challenges, competencies, and supportive care needs (SCN) of women with breast or gynecological cancer during acute cancer treatment and associations to other health‐related variables.


| INTRODUCTION
Women with breast or gynecological cancers are confronted with multiple challenges caused by their disease and its treatment. These comprise, among others, information needs, psychological and physical burdens, and sequelae 1-3 that may start from the day of diagnosis and last for years after treatment completion into survivorship. 4,5 To overcome these challenges, patients need to employ different abilities and resources. Information needs are among the most prevalent supportive care needs (SCN) of women with breast or gynecological cancer. 1,6 To reduce dissatisfaction with information that predicts higher psychological distress, 7 women need to obtain, understand, assess, and use the information that is relevant to them. 8 A substantial proportion of breast and gynecological cancer patients express psychological distress and need for support. 2,3,6 However, only half of the distressed cancer patients seek professional help. 9 It remains unclear whether patients not seeking help can cope with psychological burdens on their own or with the received support of their social environment or whether they know which professional support services are available and how they can use them.
Thus, we need to learn more about how competent the women perceive themselves in dealing with the arising coping tasks based on their abilities, knowledge, self-efficacy beliefs, and behavioral experiences. As defined by Giesler and Weis (2008), patient competence describes 'a patient's ability to deal with the tasks and distress that arise from cancer and its treatment, and, in doing so, to be guided by his or her personal needs and goals, and to make use of support available from significant others or from the healthcare system as a whole'. 10 Following a health literacy (HL) framework, 11 we assume patient competencies come into play when patients' skills or abilities are aligned with the tasks their disease and the health care system is setting them.
Therefore, the aim of the mixed-method study PAKO (Transsectoral development of patient competence of women with breast cancer and gynecological cancers) was to investigate the interplay of challenges, subjective competencies, and SCN of breast and gynecological cancer patients. Qualitative results revealed various challenges, competencies, and helpful support relevant to those patients throughout treatment. 12,13 Thereupon, the quantitative part of our study and the present paper followed three primary objectives: (i) to examine coping tasks women with breast or gynecological cancer were concerned with during acute cancer treatment; (ii) to assess whether the women experience themselves as competent, that is, evaluate themselves as able to deal with these coping tasks either on their own or with support from their social environment or professional experts and (iii) to identify remaining SCNs.
Patient competencies are associated with coping and coping selfefficacy, 14 which are predictors of breast cancer patients' emotional distress and quality of life. 15,16 Furthermore, patient competencies overlap with HL, especially when cancer patients need to deal with disease-related information. HL reflects people's knowledge, motivation, and competencies in accessing, understanding, appraising, and applying health information to practice healthcare and prevent diseases or promote health and quality of life. 17 It is associated with various self-management behaviors of cancer patients. 8,18 Thus, we examined associations between challenges, subjective coping competence or SCN and patient competencies, and HL (iv).

| METHODS
The study conformed with the principles outlined in the Declaration of Helsinki and was approved by the Ethics Committee of the Faculty of Medicine, University of Würzburg, Germany (reference number: 254/18-am). All participants provided informed consent.

| Design, participants, and recruitment
We conducted a questionnaire survey with patients with a primary diagnosis of breast, cervical, endometrial, or ovarian cancer during acute cancer treatment in a German university hospital. The treatment includes support offers, for example, psycho-oncological support, social counseling, complementary medicine, and aftercare.  Figure S1). Items were derived from qualitative research results of the first study part as relevant challenges during and beyond breast and gynecological cancer treatment. 12,13 These domains are disease-related information acquisition, evaluation, and decision-making (6 items), physical complaints and body changes (4 items), health behavior (4 items), psychological distress (5 items), aftercare (2 items), and a domain of other coping tasks concerning treatment coordination and access, financial situation, and work (4 items). Patients were asked to evaluate to which degree they felt challenged by the respective coping task on a 4-point Likert scale ranging from 'none at all' (0), 'little' (1), 'moderate' (2), to 'very much' (3). Regarding each of the 25 challenges, patients were asked to assess their competencies and SCN in a dichotomous response format ('yes', 'no') using four evaluations: 'I can overcome this challenge myself', 'I am supported in this by others', 'I need (additional) support' and 'I know how to get (additional) support'. If the named FAHMER ET AL.
-683 coping task was irrelevant to their (current) situation, patients had the additional response option 'Does not concern me'. Consequently, they could skip the subsequent ratings on competencies and SCN.

| Assessment of correlates
Patient competence. To assess illness-related competencies of cancer patients, we used the patient competence questionnaire (PCQ-57). 10,14 Its 57 items address patients' problem-focused and emotion-focused behaviors dealing with cancer and cancer treatment and comprise eight scale scores: seeking information, selfregulation, assertive interaction with physicians, striving for autonomous decisions, interest in social services, managing distress, dealing explicitly with the threat posed to life by cancer, and low avoidance. The response format for all items is a 5-point scale ranging from 'not at all true' (1) to 'completely true' (5). For items relating to emotion-focused behaviors, patients could also choose the additional response option 'not applicable' if the described aspects were irrelevant. Higher scale scores indicate a higher selfrated competence. Cronbach's alpha in our data was between 0.88 and 0.59.
Health literacy. We assessed HL using the German short version of the European Health Literacy Survey Questionnaire (HLS-EU-Q16). 19 On 16 items, patients are asked to evaluate their difficulties in accessing, understanding, assessing, and applying health-related information on a 4-point Likert scale ranging from 'very easy' to 'very difficult'. Items were averaged into a total score (range: 1-4; Cronbach's alpha = 0.89), with higher values reflecting a higher selfrated HL. Sociodemographic characteristics were assessed by self-report and clinical data were obtained from the patient charts.

| Statistical analysis
To answer research questions (i) to (iii), we performed the following computing operations and descriptive statistics: -We calculated frequencies and percentages of patients rating coping tasks as challenging (i).
-We calculated frequencies and percentages of patients who reported at least one SCN over all 25 items and separately over items of each of the four relevant domains (iii).
To answer the research question (iv), we computed Pearson correlation coefficients to analyze associations between PAKO-Questionnaire domain sum scores and established questionnaires measuring patient competencies and HL (question iv). Missing values were excluded by pairwise deletion.

| Sample characteristics
A total of 249 patients were addressed by clinic staff members, of whom 89 fulfilled exclusion criteria or refused to participate. Hence, 160 patients provided informed consent, and 123 completed the questionnaire (response rate: 49.4%). Three participants had to be excluded afterward (inclusion criteria not sufficiently met, missing data). Thus, the final sample totals N = 120 for data analysis. Reasons for non-participation were that patients had not enough time to participate before discharge, felt overburdened, did not want to deal with covered topics, or were not interested in questionnaire studies. Table 1 displays the characteristics of the sample. The mean age of participants was 54.7 years (SD = 12.2). Eighty-two percent suffered from breast cancer and about 18% from gynecological cancer (8% endometrial cancer, 7% ovarian cancer, 4% cervical cancer).

| Patients' self-reported competence and remaining SCN
Among the women who evaluated coping tasks at least as moderately challenging, 42.5%-71.4% reported feeling competent in dealing with those challenges themselves (

| Correlates of challenges, competencies or SCN and health-related variables
Among all domains, sum scores of challenges, SCN, and personal competence to deal with the challenges showed significant correlations with most of the scales, whereas received support and knowledge on how to get (further) support showed only single significant or small correlations that failed significance (Supplementary Table S1).  However, older women felt less challenged by physical complaints and psychological distress, but also felt less competent in dealing with information needs and psychological distress (Supplementary Table S2).

| DISCUSSION
This is the first study to examine how challenging acute breast and gynecological cancer patients perceive coping tasks arising from their disease and if they feel competent to deal with those tasks. Patients evaluated more than half of the coping tasks within every domain examined as at least a little challenging. However, patients indicated they felt competent to overcome most coping tasks and knew about support options. SCN were expressed by almost half of the patients, mainly regarding psychological distress and health behavior. Patients' perceived challenges, personal competencies to deal with these challenges, and SCN showed significant associations with patient competencies and HL.
The highest proportions of patients evaluated dealing with coping tasks of psychological distress as challenging, and fewer women felt competent in this regard. Feeling more challenged or in need of (further) support was associated with fewer emotion-focused competencies, such as managing distress and low avoidance. Results align with prior studies indicating that breast and gynecological cancer patients suffer from higher levels of psychological distress at diagnosis and during treatment compared to other patients 20 and are at risk of mood disorders even at an early stage of the disease. 21,22 On the other hand, subjective competence to manage those challenges was related F I G U R E 2 Patients' averages of challenging coping tasks, competence, received support, need for support and knowledge about support options among the four domains (mean, SD). Numbers in brackets indicate minimum to maximum values due to differing item counts among domains.
to better emotion-focused competencies. As initial mental health and perceived distress predict later psychological adjustment to breast cancer disease, 23 our results highlight the importance of psychooncological diagnostics and interventions during acute cancer treatment to reduce distress and foster coping competencies. 24 For example, relaxation techniques have shown to be effective in terms of psychological outcomes. 24,25 However, paying attention to relaxation is also challenging for a considerable portion of the women.
Breast cancer patients already report information challenges during the disease's diagnostic and early treatment phase, for example, due to the lack or overload of information. 26 including early information about existing support options, and initiating early psycho-oncological and self-management interventions. As HL seems to positively influence patients' competencies when dealing with challenges of different domains, it should be promoted, for example, by patient-centered communication and delivering information that is easy to access and evaluate. 12 However, further research must clarify causal relations and disparities between these two concepts.
As cancer patients are often confronted with a decline in care and support of health care providers after acute treatment is completed 40 and their needs and challenges vary over time, 31 further research is necessary to learn about how patients' competencies develop over the course of the disease. Therefore, within the scope of our study, follow-up data after 6 and 12 months will be examined.

ACKNOWLEDGMENTS
The study 'Trans-sectoral development of patient competence of women with breast cancer and gynecological cancers (PAKO)' was funded by 'Deutsche Krebshilfe' (German Cancer Aid; grant number: 70113223) as part of the German grant program 'patient orientation'. We want to thank the participating patients and all providers in the clinics who supported the study.
Open Access funding enabled and organized by Projekt DEAL.