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Keywords:

  • breast cancer;
  • cancer treatment;
  • decision-making;
  • decision satisfaction;
  • patient satisfaction;
  • psychological distress

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

This prospective cross-sectional study investigated Australian women's (n = 104) decision satisfaction with cancer treatment decision for early breast cancer as well as their psychological distress 3–4 months following surgery. Women's satisfaction was surveyed using the Treatment Decision Satisfaction Questionnaire, and the Brief Symptom Inventory-18 was used to measure psychological distress. Women who were living alone, who worked as professionals and who were not involved in the decision-making process by their doctors were less likely to be satisfied with their decision process, outcome and their overall treatment decision. Following treatment, 26.0% of women were distressed; 18.3% experienced anxiety; 19.2% somatization; and 27.9% depression. Women who experienced somatization were more likely to be dissatisfied with the treatment decision (P = 0.003) as were those who reported psychological distress (P = 0.020). Women who were involved in choosing their treatment were more satisfied with their decision. Many women experienced distress following breast cancer treatment and might have required referral for psychological assessment, management and long-term support. Women who experienced distress were more likely to be dissatisfied with the treatment decision (or vice versa).


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Breast cancer remains a major cause of morbidity and mortality for women worldwide. The decision-making process for women with early breast cancer is complicated and multifaceted.[1, 2] Women, when given the feared diagnosis of cancer, often experience shock, and extreme emotional and psychological turmoil.[3-5] When given information about treatment options, women can become emotionally distressed and cognitively overloaded,[6, 7] and might have reduced cognitive and emotional resources to deal with the treatment plan decision-making.[8-10] Women might not hear, or be able to cope with understanding the information which can impede their participation and engagement in the treatment decision.[11-13] In Australia, women are generally encouraged by their doctors to choose their preferred surgical and medical treatment for early breast cancer treatment (mastectomy (MRM) or breast conservation surgery with radiation therapy (BCT).

Background

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Women's quality of life can be adversely affected from the time of diagnosis, through the cancer treatment, recovery, and survival phases. Receiving inadequate information and/or having a limited understanding of the treatment options and outcomes can cause psychological distress for women.[5] Psychological distress can jeopardize women's ability to participate in decision-making and to make quality decisions about their preferred treatment.[9, 12] Women's response to diagnosis can be a complex array of psychological reactions, with sequelae of symptoms ranging from mild distress to severe distress, and to affective disorders such as anxiety and depression.[14] If these psychological symptoms are undetected and untreated, they can diminish women's long-term quality of life[15] and influence their treatment satisfaction.[16] Some women are cognitively overloaded[6, 17] and bewildered by the treatment information,[4] which impedes their engagement in treatment decision-making with their doctor.[11] At such times, women might seek support and advice from others such as family, partners, nurses and other health professionals. Currently, there are decision-making aids for women, but to date there are no evidence-based decision support interventions available to help guide nurses and others in advising these women. Evidence from a Cochrane review[13] reported that decision aids improve patient's knowledge but not their treatment decision satisfaction.

The study of psychological distress and psychosocial needs of women with breast cancer has only recently begun to receive the much-deserved attention by researchers. One area of research in this regard is decision-making, in particular, the realm of ‘decision satisfaction’. Decision satisfaction can be described as a subjective judgement which ‘reflects the degree to which an individual's actual experience matches his or her preferences regarding an experience’[18] (p. 250). However, decision satisfaction is not only determined by the degree to which women's choice is consistent with their preferences but also their beliefs and personal values.[10] Therefore, when measuring patient decision satisfaction, it is crucial to understand the stage of the patient's illness, treatment and context. The few available studies in this area have been limited to measuring women's satisfaction with breast cancer treatment. In studies that included the measurement of patient decision satisfaction, it was generally a side issue, and had few questions to address the phenomenon which severely limited their validity.

Objectives

The aim of this study was to investigate women's decision satisfaction and levels of psychological distress with the treatment selected for early breast cancer, 3–4 months following their initial surgery. This research used a prospective cross-sectional descriptive survey design to answer the questions in the study.

The research questions were as follows:

  1. What is women's decision satisfaction at 3–4 months following initial early breast cancer treatment?
  2. What is women's level of psychological distress at 3–4 months following initial early breast cancer treatment?
  3. What is the relationship between women's decision satisfaction and psychological distress at 3–4 months following initial early breast cancer treatment?

Ethical Considerations

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Ethics approval was obtained from the University and relevant health service districts. An information sheet was distributed at the time of the appointment and women who agreed to participate were contacted by the researchers. Women were required to sign a consent form before being accepted into the study. The participants in the study were assured their anonymity and confidentiality would be protected.

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Setting and participants

A convenience sample of 104 women diagnosed with early breast cancer from three regional locations in Queensland, Australia, was included in the study. Two of the three locations provided both chemotherapy and radiotherapy services. One location offered chemotherapy only and the distance to the nearest oncology radiation service was a minimum of 400 km. Early breast cancer was defined as Stage I-IIA which corresponds to nodes and metastases that are T1-2, N0-1, M0.[19] The initial treatment offered to women was either MRM or BCT. Women were invited to join the study at their first appointment by their treating surgeon.

Data collection and instrument

Women were mailed the Treatment Decision Satisfaction Questionnaire (TDSQ)[20] and the Brief Symptom Inventory-18 (BSI-18)[21] at 3–4 months following commencement of their initial breast cancer treatment. This survey achieved a 97% response rate. The instrument contained the following information.

Socio-demographic

These variables included women's age, education, marital status, employment status, income, and personal and family history of breast cancer.

Choices and involvement in treatment decision

Women were asked to indicate their involvement in choosing a treatment plan using two closed-ended questions.

Decision satisfaction

This is defined as women's satisfaction with their process, outcome and overall (global) with their treatment decision and measured using the TDSQ.[20] This questionnaire was developed from modifying a previous instrument development by Pierce.[22] The content of this questionnaire (TDSQ) was validated from the literature and a reference group of 10 previous breast cancer survivors. The TDSQ instrument was pilot tested on 20 participants in the present study as no changes to the research protocol was required. This instrument contained 16 items scored on a seven-point Likert scale divided into two dimensions through clinical judgement as: Decision Process Satisfaction (α = 0.91; 6 questions); and Decision Outcome Satisfaction (α = 0.95; 10 questions). The Global Decision Satisfaction (α = 0.95) related to the overall decision satisfaction of the treatment choice (decision process and outcome) and was calculated by totalling all the TDSQ 16 items and averaging the score.

Psychological distress

The women's distress levels were measured using the BSI-18[21] which contains 18 questions scored on a five-point Likert scale. This inventory measures contains six items for each dimension of the following: Somatization (α = 0.74); Depression (α = 0.84); and Anxiety (α = 0.79).[21] The Global Severity Index (GSI) score (overall psychological distress) was calculated by the total sum of the items. To identify positive cases, the BSI-18 items were analysed following the guidelines outlined in the BSI-18 scoring manual.[21] Women who scored 63 or over in any BSI-18[21] dimension were identified as a ‘positive case’ of distress.

Satisfaction with support

These items were chosen from the literature and after discussion with nurses and surgeons. Women were asked to indicate their satisfaction with support using 10-items using a seven-point Likert scale. The questions asked women to rate their satisfaction with the support they received when making their treatment decisions, namely: financial, family, social, psychological, emotional, nursing, informational, spiritual and religion.

Data Analysis

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Descriptive analyses of all the data were performed. Chi-square tests, non-parametric Wilcoxon and Kruskal–Wallis tests, and Spearman's rank correlation statistics assessed the bivariate associations between women's demographic variables; treatment decision satisfaction; satisfaction with support and women's distress levels. The three scores of decision satisfaction as well as the four scores from the normalized BSI-18 were logarithmic transformed to approach approximate normal distribution. Multiple linear regression analyses were used to investigate factors influencing the transformed decision satisfaction and BSI-18 scores. All demographic characteristics as well as type of treatment and level of involvement in treatment choice were considered in the seven multivariate analyses. After a multivariate linear model was established, all remaining factors were assessed for confounding. A characteristic was considered a confounder when it changed the estimate by about 10% or more. Statistical analysis was conducted using SPSS version 18 (PASW, SPSS Inc., Chicago, IL, USA). The significance level was set as 0.05.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Participant characteristics

The mean age of women was 58.8 years (SD ± 11.9) and ranged between 27 and 83 years. More than 20% (21.2%) of women were aged less than 50 years. The majority of women (67.3%) were living in a partnership (see Table 1). More women (64; 62.1%) indicated receiving BCT than MRM (43; 41.7%); 51.5% received radiotherapy and/or 33.0% chemotherapy.

Table 1. Women's socio-demographic characteristics (n = 104)
SociodemographicsNumber (%)
  1. † Not all women answered all questions. TAFE, technical and further education.

Age (years) 
 < 5022 (21.2)
 50–5927 (26.0)
 60–6937 (35.6)
 70 or older18 (17.3)
Living in partnership70 (67.3)
Highest level of education 
 Less than high school67 (64.4)
 High school15 (14.4)
 TAFE12 (11.5)
 University10 (9.6)
Total yearly income (AUD) 
 < 6 0003 (2.9)
 6 001–20 00050 (49.0)
 20 001–50 00034 (33.3)
 > 50 00015 (14.7)
Employment 
 Full-time18 (17.3)
 Part-time15 (14.4)
 Retired46 (44.2)
 Homemaker16 (15.4)
 Disabled6 (5.8)
 Unemployed3 (2.9)
Believed in God85 (81.7)
History of cancer for participants 
 Breast cancer2 (1.9)
 Other cancers24 (23.1)
History of cancer in family or close friend 
 Breast cancer42 (40.4)
 Other cancers74 (71.2)

Decision satisfaction

Many women were on average satisfied with their decision process (90.4%) and outcome (94.1%). The descriptive statistics for the decision satisfaction dimensions are presented in Table 2. The majority (69.3%) of women indicated being offered treatment choices and 44.6% reported being actively involved in the treatment decision. No significant relationships were found between the women's treatment nor their age with their decision satisfaction scores. Those women who lived alone were less likely to be satisfied with their decision process than those living with others (regression coefficient −0.064; P = 0.002). Professional women were found to be less satisfied with their decision outcome than non-professional women (regression coefficient −0.070; P = 0.002). Women who were not involved in the decision-making process were less satisfied with this process, the decision outcome, and scored lower on the global satisfaction scale compared with women who were involved in the decision-making process (P < 0.001, respectively; Table 3).

Table 2. Descriptive statistics of women's decision satisfaction (TDSQ) scores (n = 104)
 Decision process satisfaction (n = 104)Decision outcome satisfaction (n = 102)Global decision satisfaction (n = 102)
  1.  2 implies on average agreement with statements.  Implies that two women did not answer all the questions.

Median22.12
IQR(1.2 to 2.6)(1.8 to 3)(1.5 to 2.7)
Range−2.7 to 31.6 to 3−1.4 to 3
Table 3. Results of multiple linear regression analyses investigating factors which were related to decision satisfaction of 104 women with breast cancer
 Coefficient (95% CI)P-value
  1.  Professional was significant before model was adjusted for the confounding effects of age.  Model for decision process was adjusted for the confounding effects of age. 95% CI, 95% confidence interval.

Satisfaction with decision process  
 Living alone−0.064 (−0.104, −0.025)P = 0.002
 Working as a professional−0.049 (−0.100, 0.003)P = 0.065
 Not being involved in decision-making process−0.152 (−0.200, −0.104)P < 0.001
Satisfaction with decision outcome  
 Living alone−0.033 (−0.067, 0.000)P = 0.049
 Working as a professional−0.070 (−0.114, −0.027)P = 0.002
 Not being involved in decision-making process−0.080 (−0.120, −0.041)P < 0.001
Global satisfaction score  
 Living alone−0.042 (−0.075, −0.010)P = 0.011
 Working as a professional−0.064 (−0.106, −0.022)P = 0.003
 Not being involved in decision-making process−0.107 (−0.145, −0.068)P < 0.001

Psychological distress

The summarized positive cases of women on the BSI-18 scores after initial treatment are listed in Table 4. Women who lived alone (P= 0.037) and were more educated (P= 0.010) reported higher somatization scores. Younger women (P= 0.024) and those more educated (P= 0.034) were more likely to experience depression. Women who were not actively involved in their treatment decision were more likely to score high on the depression scale (P = 0.007). Multivariate analysis results for factors related to women's distress are presented in Table 5.

Table 4. Positive cases of women on the BSI-18 scores (n = 104)
Positive casesSomatizationDepressionAnxietyGSI
  1. † Scored a positive case; this implies they either had 63 or above or a total of 63 or above in two dimensions.

Number of positive cases20291927
Percentage19.227.918.326.0
Median raw score333.510.5
Interquartile range(1, 7)(1, 7)(1, 7)(5, 22.5)
Range0–220–200–230–65
Median standardized t-score535550.554
Interquartile range(46, 61)(46, 63)(43, 59)(46, 62.8)
Range39–8140–8136–7931–80
Table 5. Results of multiple linear regression analyses investigating factors which were related to BSI-18 for 104 women with breast cancer
 Coefficient (95% CI)P-value
  1. ** P-value was significant before model was adjusted for the confounding effects of marital status; *** P-value was significant before model was adjusted for the confounding effects of level of education.  Model for somatization was adjusted for the confounding effects of marital status;  Model for depression was adjusted for the confounding effects of being currently employed. § Model for anxiety was adjusted for the confounding effects of being currently employed.  Model for GSI was adjusted for the confounding effects of level of education. 95% CI, 95% confidence interval.

Somatization  
 Living in a regional centre−0.065 (−0.131, 0.001)P = 0.053**
 Level of education year 12 or higher0.092 (0.023, 0.160)P = 0.009
Depression  
 Age 60 years or older−0.209 (−0.301, −0.117)P < 0.001
 Living in a regional centre−0.085 (−0.161, −0.010)P = 0.027
 Not being involved in treatment decision0.134 (0.037, 0.231)P = 0.007
Anxiety§  
 Age 60 years or older−0.154 (−0.252, −0.055)P = 0.003
GSI  
 Age 60 years or older−0.086 (−0.175, 0.002)P = 0.055***
 Living in a regional centre−0.090 (−0.175, −0.004)P = 0.039

Women's satisfaction with their decision process, outcome and global satisfaction was negatively correlated with Somatization symptoms and their GSI score. Those women who experienced more Somatization symptoms were less satisfied with their decision process (P= 0.008), outcome (P= 0.004) and global decision (P= 0.003) than other women. Women who experienced overall higher distress levels (GSI) were less satisfied with their decision process (P= 0.028), outcome (P= 0.029) and global decision (P= 0.020) than other women with less distress. Women who were satisfied with the support they received were satisfied with the treatment decision (P= 0.01).

Satisfaction with support

The majority of women were satisfied with the support they had received during the time they were making their treatment decision. Positive correlations were identified between the overall support satisfaction score and process (P < 0.001), outcome (P < 0.001), and global decision satisfaction (P < 0.001).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

A small group of women were undecided or dissatisfied with their treatment decision 3–4 months following commencement of surgical treatment, which reflects the findings, reported in previous research.[23, 24] Almost 65% of women had undergone breast conservation surgery with radiation therapy. Women that were experiencing somatization symptoms were less likely to be satisfied with the selected treatment. Those women who received BCT would have undergone radiation therapy and might have suffered unanticipated treatment side-effects. These women could have been traumatized by the side-effects, duration and distance required to travel to receive radiation therapy. The consequential emotional distress from their treatment might have overshadowed and negatively influenced their satisfaction perception.[25] Many women lived in regional areas of Australia, with limited access to specialist treatment centres, without travelling vast distances. Women whose preferred treatment would be BCT might be unsatisfied, because they received MRM without reconstruction, because of their limited access to radiation therapy. All these factors and other adjunct treatment could have caused further distress for women and influenced their satisfaction with the treatment decision.

The majority of women indicated having family and friends with breast cancer and these experiences might have influenced their treatment expectations as described by other authors.[26] Many women had a history of familial breast cancer and these older family members might have received disfiguring radical mastectomies. These memories could have influenced some women to choose BCT. These women might have been too distressed and underestimated the adverse reactions of radiation therapy.

Our study supported previous findings[23, 27] that women who were offered choices and more involved in decision-making were more satisfied with their choice for early breast cancer treatment. The difficulty in practice is selecting the best methods to encourage active involvement by women in shared decision-making. Currently, no evidence-based guidelines for nurses are available to provide decision support interventions to engage women in shared decision-making and thus increase their satisfaction with the treatment choice. Many studies appear in the literature regarding assessing women's preferences for sharing decision-making for breast cancer treatment[11, 28, 29]; however, these have not found statistically significant relationships with decision satisfaction.[23] What women need, as well as treatment information, is comprehensive customized decision support interventions. It is imperative that women's preference for involvement in the treatment decision is elicited prior to devising a treatment plan.[30, 31] Even if a woman's preference is to defer the responsibility of the treatment decision with the doctor, it appears important to remember that the failure to participate might occur for many reasons. For example, women could be so emotionally overwhelmed by the clinical diagnosis that they are unable to engage in decisions about their treatment.

Evidence suggests that participation in the decision process can lead to better adjustment posttreatment and reduce psychological morbidity[30, 32] and improve quality of life,[33] it is important to look for ways to help the women engage in this process. Ways to support engagement might include referral for psychological assessment and management, with the availability of clear, concise written information and allocation of time and emotional support for the women prior to a declaration of a treatment plan.[34] There is also mounting evidence that women's preoperative psychological state influence their postoperative outcomes such as their psychological morbidity and psychological distress levels.[12, 17] No relationship was found between women's age and their decision satisfaction, and is consistent with other research.[35] These findings suggest that women make decisions based on other factors such as treatment outcomes,[36, 37] and require information on all treatment options including breast reconstruction regardless of their age.

Some sociodemographic factors were identified as being associated with women's decision satisfaction. Women who lived without a partner were more likely to be dissatisfied with the treatment decision and experienced somatization symptoms. As cited in other research, this finding might indicate that these women could experience higher psychological distress[6, 16, 17] and have less emotional support available to them when choosing a treatment. These women might require more time and emotional support when choosing a treatment plan.

Women who were more educated were more likely to be dissatisfied with the treatment decision. This finding might indicate that women could have different expectations related to treatment decisions based on their level of education. Less educated women might prefer to defer or share the responsibility of choosing a treatment with their doctor which is consistent with other work.[11, 38] Whereas women with higher education might want more responsibility, final control of the decision and experience postdecision regret related to their process of decision-making, as found by Pierce.[39] Further research, which specifically focuses on the relationship between women's expectations, education and decision satisfaction, is required to support this assumption.

Women were found to be experiencing similar rates of anxiety and depression following surgery, and support other Australian research.[32, 40-43] Many factors associated with distress have been identified in women's sociodemographic profiles.[44, 45] In the present study, women who lived alone, who were younger and had higher education levels, were more likely to experience distress, which is comparable with other research.[44, 46] Following initial treatment, the continued psychological assessment of women is required throughout the cancer trajectory to identify those at risk of developing psychiatric conditions.

Limitations

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

A convenience sample was used in the study and therefore the results are not necessarily representative of the wider breast cancer population. The sample size was relatively small and many non-significant statistical results were identified. The TDSQ[20] instrument requires further psychometric testing to determine other forms of reliability and validity measures. Women were recruited from three coastal areas and therefore the results might not reflect the distress levels and decision satisfaction of women living in other areas of Australia. Some women were not referred into the study because their doctor thought they were too distressed or too old; this is a real concern as these women might be most at risk for psychological morbidity and could have difficulties engaging in the decision process. The majority of women were recruited from the public health system and those women accessing the private health system were underrepresented in the study and might be living in a higher economic social group, higher educated, more active in decision-making and prefer an MRM with breast reconstruction.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

Our research identified a clear relationship between women's distress levels and decision satisfaction following initial breast cancer treatment. Women need to have regular psychological assessment to detect distress throughout their cancer trajectory and be encouraged to engage in shared treatment decision-making. A major concern is the potential long-term impact of dissatisfaction about treatment decisions on patient psychological morbidity and quality of life. Given the lack of systematic research that focuses beyond the initial treatment period, more longitudinal studies are needed to gain a better understanding of the long-term consequences of distress and the satisfaction with treatment decisions of women with early breast cancer. The new knowledge generated from this research contributes to developing evidence-based decision support interventions delivered by nurses. Individualized decision support interventions by nurses can help to identify those women at risk and refer them to specialist services.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References

The authors acknowledge and thank Professor Penny Pierce for her intellectual generosity towards the project, and Dr Boris Chern and Dr Richard Turner for project support. This work received a grant from James Cook University, Australia.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Ethical Considerations
  6. Method
  7. Data Analysis
  8. Results
  9. Discussion
  10. Limitations
  11. Conclusion
  12. Acknowledgements
  13. Conflict of Interest
  14. References
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