Dissertation committee:
Πατηράκη-Κουρμπάνη Ελισάβετ, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ, Επιβλέπουσα
Λεμονίδου Χρυσούλα, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Κατσαραγάκης Στυλιανός, Επίκουρος Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Κακλαμάνος Ιωάννης, Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Καλοκαιρινού Αθηνά, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Μάντζιου Βασιλική, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Σουρτζή Παναγιώτα, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Summary:
Background: Although Advanced Breast Cancer(ABC) remains an incurable disease, recent improvements in treatment have resulted in substantial increases in the length of patients’ survival. A diagnosis of ABC is a life altering event for most of the patients, who must learn to live their lives in uncertainty and face a variety of challenges in physical, emotional, social and practical level. Supportive care needs’ assessment of these patients is the first, crucial step in order to provide comprehensive and timely quality cancer care to those who really need it.
Aim: The purpose of this study was to describe the unmet supportive care needs of ΑBC female patients undergoing chemotherapy at One-Day Clinic (ODC) and identify predictors of change of these needs’.
Methods: This cross-sectional study was conducted at the ODC of two cancer hospitals in Attica with ABC patients undergoing chemotherapy
The sample of the study: Α convenient sampling was conducted. Of the 135 eligible patients, 132 ambulatory ABC female patients receiving chemotherapy (response rate 97%) consented to participate.
Measurements tools: The following tools were used: a)The translated in Hellenic language Short-Form Supportive Care Needs Survey Questionnaire(SCNS-SF34) which consists of a 34 items 5-point (1-5) Likert type scale that covers five domains of need: Health System and Information (HIS) (11 items), Psychological (PS) (10 items), Physical (PH) (5 items), Care and Support (CS) (5 items), and Sexuality (S) (3 items). b) Hospital anxiety and Depression Scale (HADS), c) European Organization in Research and Treatment of Cancer (EORTC QLQ C30 and Breast Module) for the assessment of Quality of life, d) Memorial Symptom Assessment scale (MSAS) e) Comprehensive Score for Financial Toxicity (COST), f) the performance status scale Palliative Performance Scale (PPS), g) a demographic and clinical characteristics form. Data were collected through personal interviews carried out by the principal investigator during chemotherapy infusion or while waiting for the chemotherapy to start.
Results: Τhe participants’ median age was 61,5 years. Most of the participants were married/ or in relationship (60,6%), had children (84,1%), primary or secondary education (69,2%) and lived in less than one hundred kilometers distance from the ODC . The mean number of months after the initial breast cancer diagnosis was 83 and almost all of the participants had already a kind of anticancer treatment (96,2%). The mean score of performance status was 72,5(0-100). The participants of the study had moderate unmet supportive care needs. The most frequently unmet Patients needs were found in the Psychological (59,5±30,1) domain, followed by the Physical and Daily Living domain (57,6±29,4) and Health System and Information domain (49,5±24,8). Patients reported the least unmet supportive care needs in the Sexuality domain (10,9±26,2). The 10 most common unmet needs belonged to Psychological domain (6 items), the Physical and Daily Living domain (3 items) and the Health System and Information domain (1 item) and were: ‘Fears about the cancer spreading’(84,1%), ‘Uncertainty about the future’(82,6%), ‘Concerns about the worries of those close to you’(79,5%), ‘Anxiety(78%)’, Feeling down or depressed’(77,3%),’Feelings of sadness’(77,3%), ‘Not being able to do the things you used to do’(87,1%%), ‘Feeling unwell a lot of time(78%)’, ‘Being informed about cancer which is under control or diminishing(72,7%)
Study’s participants had moderate global quality of life (62,9±21,7), cognitive functioning (63,1±32,4),emotional functioning (50,5±26,6), physical functioning (43,6±24,6), low social functioning (37,6±37,3) and role functioning (30,2±35,1). Also, they reported high levels of fatigue (68,7±31,7), but positive future perspective (75,3±33,7) and body image (70,6±29,4).
The mean number of reported symptoms was 12. Patients reported unrelieved symptoms as follows: Reduced energy (84,8%), anxiety/troubles (81,1%), Sadness(80,3%), and alopecia(76,5%). The total score of distress subscale (1,5±,71) and physical(1,1±,58) and psychological (1,8±,95) symptoms were moderate. The levels of anxiety (7,4±4,2) and depression (6,0±5,2) and financial toxicity (18,4±10,9) as well were moderate.
Patients needs in psychological domain were related to global quality of life and most functioning subscales, levels of anxiety and depress, total number of symptoms and higher symptom distress and less to financial toxicity. Women who cared an adult person, had higher level of depression, more symptoms, low emotional functioning and good cognitive functioning had more unmet psychological needs (Depression was the most powerful predictor of change 37,3%) (R2 =0,761).
Needs in Physical/ Daily living domain were associated with performance status, perceived global Quality of Life and most subscales, the higher Number of symptoms, , the higher symptom distress, and less with levels of anxiety and depression and financial toxicity. Women who had had surgery-chemotherapy, had more psychological symptoms with MSAS, poor quality of life and role functioning, higher levels of fatigue and pain and better body image had higher unmet needs in Physical/ Daily living domain (Psychological subscale of MSAS was the most powerful predictor of change 40,1%) (R2 =0,802).
Needs in Health System and Information domain were associated with having children, family income, number of chemotherapy cycles, perceived global quality of life and most functioning and symptom subscales, the higher number of symptoms, the higher total score in MSAS, the higher distress, higher levels of anxiety and depression and financial toxicity. Women who had undergone greater number of chemotherapy cycles had fewer unmet needs. Women who had worse performance status, elevated levels of fatigue, lower sexual functioning, better future perspective, lower total number of symptoms but more physical symptom and more financial toxicity had more unmet needs in Health System and Information domain (future perspective was the most powerful predictor of change 15,9%) (R2 =0,429).
Needs in Patient care and Support domain were associated with having dependent adult, educational level, the distance of the residence from the clinical site, number of chemotherapy cycles, poor quality of life and in some of the functioning and symptom subscales, high number of symptoms, high total distress, high levels of anxiety and depression and higher financial toxicity. On the contrary, patients with higher educational level, higher number of chemotherapy cycles, low role functioning, higher levels of depression and higher financial toxicity had more unmet needs in in Patient care and Support domain (financial toxicity was the most powerful predictor of change 11,7%) (R2 =0,317).
Needs in Sexuality domain were associated with age, having children, marital status, employment status, better performance status, physical and sexual functioning and financial toxicity. Women with younger age, having young children, lived more than 100 kilometers from ODC, had higher unmet sexual needs (Having young children was the most powerful predictor of change 18,6%) (R2=0,251)
Conclusions: Patients with ABC undergoing chemotherapy in ODC had many unmet supportive care needs in Psychological domain, Physical/ Daily Living domain and Health system and Support domain. Quality of life, Symptom experience, levels of anxiety and depression and perceived financial toxicity were associated with supportive care needs. The comprehensive assessment of supportive care needs of ABC patients is of paramount importance as enables health care providers to fully grasp their patients’ preferences and views on important aspects of care and take them into consideration to health care services planning. Further longitudinal and qualitative studies is anticipated to contribute in deeper understanding of their supportive care needs and more effective management as well as development of appropriate services.
