Background

Advances in the detection and treatment of cancer have increased survival rates over the last decades. With improved survival rates, more patients will develop spinal metastases, which can lead to devastating consequences including progressive and unremitting pain, spinal instability and metastatic epidural spinal cord compression (MESCC) [1,2,3]. Spinal metastases may therefore significantly impair the patients’ health related quality of life (HRQOL). The treatment goal for patients with spinal metastases is to enhance HRQOL by suppressing symptoms for their remaining time. Radiotherapy has a central role in palliative treatment of uncomplicated painful spinal metastases, and aims to relieve pain and locally control the tumor. However, surgery may be required in case of mechanical pain, pathological fracture and/or neurological deficit caused by MESCC, with or without adjuvant radiotherapy [4].

A patient’s HRQOL is a subjective and multidimensional construct and hence influenced by satisfaction with current health status, usually encompassing physical, emotional, and social functioning [5]. Pre-treatment expectations have been shown to play an important role in post-treatment quality of life [6]. When pre-treatment expectations are met after treatment, patients are more likely to be satisfied and perceive their post-treatment health status as more favorable, resulting in a higher quality of life [7,8,9]. When expectations are not met after treatment, patients will be less satisfied and hence, quality of life will be lower [6, 9].

Little is known about expectations of patients with spinal metastases undergoing radiotherapy and/or surgery. Assuming that patients with spinal metastases share characteristics with patients who had spinal surgery for non-cancer related conditions and with advanced cancer patients, we performed a meta-aggregation to synthesize findings of published qualitative studies to explore patient expectations regarding treatment outcomes following spinal surgery and patient expectations regarding treatment outcomes in advanced cancer care. The objectives were to study patient expectations after treatment and to draw parallels with the metastatic spine population.

Methods

We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [10]. The protocol was prospectively registered in the PROSPERO database (CRD42020145151).

Search strategy and selection criteria

Comprehensive searches were performed in the MEDLINE, EMBASE and PsycINFO databases. The search strategy was developed in close consultation with a university librarian. The search strategies can be found in Additional file 1. The search was restricted to articles in English or Dutch and published between 2000 and September 2019. Quantitative and qualitative studies that gave understanding of patients’ pre-treatment expectations regarding treatment outcomes were included. Studies were eligible when they included adult patients (> 18 years old) undergoing spinal surgery or with advanced cancer receiving palliative care. Two reviewers (AV and RG) independently screened titles and abstracts to identify articles requiring full-text review. The reference lists of included articles were searched for relevant articles. Next, full-text review was performed by two reviewers (DO and RG). If consensus was not reached, a third reviewer (AV) was consulted.

Qualitative appraisal

Quality of the included studies was independently assessed by two reviewers (DO and RG). Qualitative studies were assessed using The Critical Appraisal Skills Programme (CASP) tool for qualitative studies and cohort studies to assess study aims, methods, design, recruitment, data collection and analysis, researcher-participants relationship, bias and confounding, ethics and reporting. The CASP tool for qualitative studies comprises 9 questions that are scored with ‘yes’, ‘no’ or ‘can’t tell’ to explore whether study results are valid and relevant [11]. Question 10 was adapted to assess the relevance of the study results for this review. The CASP tool for cohort studies was modified; question 3 was removed since there is no exposure that is relevant for this systematic review, and questions 5a and 5b were combined [12]. This resulted in 9 questions that are scored with ‘yes’, ‘no’ or ‘can’t tell’. Question 6 was only assessed when pre-treatment expectations and fulfillment of expectations were measured. Questions 7, 8 and 12 were used to assess the relevance of the study results for this review. Quality assessment was not used to exclude studies, but provided information about methodological rigor (i.e., appropriateness of the methods with regard to the study aims), credibility of findings (i.e., congruity between findings and supporting data), and robustness of included studies. This information was used as an indicator of the validity of the reported results and taken into account when interpreting the data.

Data extraction

Data from the included studies were extracted by two authors (DO and RG) using a predefined data extraction form that included information on the study characteristics (study aim, study population, methodology, phenome of interest). Relevant results (i.e., findings) as well as accompanying illustrations (i.e., quotations, statements or other textual extractions) supporting the findings were extracted from the included studies. A level of credibility (unequivocal, credible or not supported) was assigned to each finding [13]. Discrepancies between reviewers were discussed with a third author (AV).

Data analysis

Data synthesis of the extracted findings was done according to the meta-aggregation method developed by the Joanna Briggs Institute [14]. First, unequivocal and credible findings as extracted from the included studies were aggregated into categories based on similarity of outcomes. Next, these categories were combined based on similarity in concepts and outcomes, resulting in synthesized findings. Categories and synthesized findings were presented as statements, i.e., an overarching description that conveys the meaning of a set of categories or findings. Data synthesis was performed by one reviewer (RG). The data synthesis process was checked by, and discussed with a second reviewer (DO).

Results

Screening and search outcomes

The search strategy yielded 7343 articles. After removing duplicates, 5664 titles and abstracts were screened, resulting in 92 articles for full-text review (Fig. 1). In total, 31 articles met the inclusion criteria.

Fig. 1
figure 1

PRISMA flow diagram of the literature search and study selection

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Included studies

The 31 studies were published between 2001 and 2019 (Table 1). Seventeen studies included patients undergoing spinal surgery and 14 studies included patients receiving advanced cancer care. In most studies, pretreatment expectations served as a determinant of a specific outcome such as post-operative pain, post-treatment fulfillment of expectations or satisfaction [6, 15, 17, 20,21,22,23, 25,26,27, 29, 30, 36,37,38, 41, 43]. In other studies, the main objective was to gain insight into expectations [16, 18, 19, 24, 28, 31,32,33,34,35, 39, 40, 42, 44]. Methods to measure expectations included (semi-structured) interviews, surveys and one study used audio-recordings of the consultation.

Table 1 Characteristics of the included studies
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The quality appraisal showed that the overall quality of the included studies was high (Table 2). However, most studies scored “no” on the item assessing the generalizability of the results because these studies enrolled patients from one (specialized) center, had a small sample size, or experienced selective drop-out [6, 18,19,20,21, 23, 26, 30,31,32,33,34, 36, 38, 43, 44].

Table 2 Quality appraisal of studies
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Synthesized findings

In total, 78 findings with 152 illustrations were extracted from the 31 included studies and assessed as credible or unequivocal. These were aggregated into 12 categories, which were combined to 3 synthesized findings.

Finding 1: the majority of patients expected improvement on several domains after treatment, but these expectations were often overly optimistic

Overall, patients scheduled for spinal surgery expected relief of their symptoms and improvement in physical functioning and undertaking daily activities after surgery (Table 3). However, many studies reported that patients had high and overly optimistic expectations of post-operative outcomes in terms of reduction in (back and leg) pain, symptom relief and better physical functioning [6, 16, 17, 22, 24, 25, 28, 31,32,33, 35, 36, 39, 40, 42,43,44]. For example, Mannion et al. concluded from their study on patients who had decompression spinal surgery that “the expectations declared before surgery had been overly optimistic in approximately 30% to 40% patients for leg pain, back pain, walking capacity, independence, social function, and mental well-being, and in almost 50% patients for general physical capacity at home and work (general function) and sport.” [22]

Table 3 Synthesized finding 1: The majority of patients expected improvement on several domains after treatment, but these expectations were often overly optimistic
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Rehman et al. conducted interviews with surgeons and concluded the following: “More often than not, surgeons reported that patients were overly optimistic about surgery, expecting complete recovery, including their back pain: “... often patients think their symptoms will go away 100%... so that’s the expectation I do try to dampen down, because it’s not realistic’”“ [24]. This is line with the findings of Lattig et al. [16] They reported that patients consistently had higher expectations than their spine surgeon regarding back pain and functioning (i.e., activities at work, household activities, and sports).

From the studies that measured post-operative fulfillment of expectations, some studies reported (at least some) expectations regarding post-operative outcomes were met in the majority of the patients who had undergone spinal surgery [17, 20, 27, 29]. However, other studies reported that expectations were not fulfilled and exceeded actual outcomes [6, 15, 21, 23, 28, 30]. Van der Horst et al. reported that “more than half of the participants (n = 7) had expected recovery to be easier or at least a more upwards trajectory instead of the struggle they experienced in reality.” [28] Likewise, a patient in the study of Accardi-Ravid et al. said: “The only thing that really surprised me—I was completely disabled as far as being mobile. And maybe they didn’t explain that to me, to my full benefit, that I would be completely disabled as far as walking and stuff like that. I thought I’d have more ambulatory ability... I had to really work on that as far as learning how to walk again and I had to use a walker and practice.” [15] Mancuso et al. studied expectations of several domains in patients who had lumbar or cervical spine surgery, and concluded that expectations regarding pain were most often met, while return to work the least often [20].

Studies regarding expectations of patients with advanced cancer reported that patients expected improvement from chemotherapy (e.g., symptom relief and feeling better) [36, 41], but these expectations were overly optimistic [37, 41]. Most of these studies reported that patients with advanced cancer believe that their cancer is still curable and that the planned treatment (radiotherapy, chemotherapy or immunotherapy) is likely to cure their disease. For example, Sze et al. illustrated: “Patients were able to acknowledge the terminal nature of their illness and still remain hopeful for a cure or remission. One lady said, “I’ll be around for another ten years. This brain tumor is going to be cured. It’s going to be shrunk to nothin”. However, when asked regarding the prognosis of her disease she said, “Well it’s not curable disease”. At times, there appeared to be a tension between a patient’s hope for cure and a suppressed realization of their true prognosis.” [42]

Finding 2: patient counseling is important for patients’ understanding of disease and treatment

Information provided by spine surgeons was important for patients scheduled for spinal surgery (Table 4). Accardi-Ravid et al. reported that some patients who had undergone spinal surgery indicated that their surgeon managed their preoperative expectations by negotiating the treatment objectives and explaining the expected results to the patient [15]. Rehman et al. identified different methods for surgeons to improve patient understanding, e.g., stimulating further deliberation or calling the patient the night before the surgery [24]. However, other patients did not feel adequately prepared for surgery and “patients often mentioned vague, positive qualifiers in response to what they expected from surgery”, for example: “To be honest, I thought I would go into—at least I felt like I was led to believe that—I would have the surgery, the pain would be relieved, and my neck would be stable and I could go on with my life.” and “I thought that I would just hang out in the hospital bed, take my drugs, be on my phone, and just watch TV.” [15] Lattig et al. found patients and spine surgeons to have a different understanding of the terms associated with spinal disease, which may have resulted in overly optimistic patient expectations [16]. Rehman et al. concluded that providing an excessive amount of information was a barrier in disease and treatment understanding. Patients forgot information given by the spine surgeon or they were not able to process the information [24]. For example one spine surgeon expressed: “In spite of explaining everything with the help of patient images and/or models, I am surprised how little they actually take home.”

Table 4 Synthesized finding 2: Patient counseling is important for patients’ understanding of disease and treatment
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When asking patients with advanced cancer whether they understood the incurable nature of their disease, many studies reported that the majority of patients understood the treatment goals, i.e., palliation, symptom relief, and/or improvement of quality of life [33, 39, 40]. According to Sze et al., patients with advanced cancer had varying information needs for future decision making, e.g., about prognosis: “… while some patients want more information, others have less need for knowledge to facilitate their decision making, preferring instead to defer to the knowledge of their doctors.” [42]

Finding 3: patient expectations were influenced by various factors, including age, health condition and socioeconomic status

Multiple demographic, psychological and clinical characteristics were associated with patient expectations regarding treatment outcomes (Table 5). Younger patients undergoing spinal surgery who were physically and functionally more impaired had higher expectations (e.g., expected complete improvement) [18, 19]. One study found that better general health before surgery was associated with higher preoperative expectations [29], while another study found no association [27].

Table 5 Synthesized finding 3: Patient expectations were influenced by various factors, including age, health condition and socioeconomic status
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In patients with advanced cancer, one study found that older patients had more realistic expectations of cure [31]. In contrast, Chen et al. concluded that older patients were more likely to believe that they could be cured with palliative treatment [32]. A higher income was associated with more accurate and more optimistic expectations [31, 40]. Chow et al. reported that disease characteristics (e.g., Karnofsky performance status, site of primary cancer and metastases, and symptom distress) did not affect expectations of cure [33]. However, pain at diagnosis influenced expectations regarding post-treatment pain reduction [34].

Discussion

This systematic review synthesized findings of expectations regarding treatment outcomes from patients undergoing spinal surgery for non-cancer related conditions and from patients with advanced cancer. Assuming that patients with spinal metastases share characteristics with these two populations, we studied patient expectations of these populations and draw parallels with the metastatic spine population. Based on these synthesized findings, we can conclude that patients who undergo spinal surgery and patients with advanced cancer tend to have overly optimistic expectations regarding treatment outcomes including pain and symptom relief, lower functional disability, (complete) recovery and prognosis. Discussing expected pain and symptom relief, recovery and prognosis before treatment may improve understanding of prognosis and promote and manage realistic expectations, which, in turn, may lead to better perceived outcomes and satisfaction.

Two previous systematic reviews concluded that higher preoperative expectations in patients undergoing spinal surgery predict higher post-operative satisfaction, improved functional outcomes and pain relief, but findings were not consistent [45,46,47]. In these reviews, no distinction was made between realistic and overly optimistic expectations. It may be that realistic positive expectations of post-operative improvement are associated with positive outcomes, but that overly optimistic expectations are associated with less favorable outcomes. Studies in patients undergoing other orthopedic surgical procedures (e.g., lower limb joint replacement) showed that not fulfilling pre-operative expectations was a strong predictor for dissatisfaction after surgery [48, 49]. Because patients with overly optimistic expectations are less satisfied with their post-operative health status, it is likely that they rate their quality of life lower. Saban et al. found that fulfillment of expectations was associated with higher quality of life [6].

Physicians have an important role in supporting patients to develop realistic expectations. Excessive amounts of information provided by physicians result in limited recall and diminished understanding of the disease and surgery [24]. In addition, discrepancies between patients and physicians in understanding of the medical terms associated with spinal disease might affect how patients appraise the information provided (e.g., what patients remember after consultation and which message they take home). This might result in overly optimistic expectations. Multiple studies in this review concluded that expectations of patients undergoing spinal surgery were too high and often not fulfilled after surgery. Given the impact of unfulfilled expectations on post-operative satisfaction and quality of life, it is important that physicians review patient expectations before surgery, and adjusts where needed.

Patients with advanced cancer often acknowledged that they understand the palliative treatment goal. Yet, most patients still expected that treatment will cure their disease. This contradiction raises the question as whether patients really understand the meaning and implication of palliation. Lay language and insuring that the patient understands the vocabulary used is critical. It is important that patients have realistic expectations of their prognosis because this will help them acknowledge their incurable disease status and engage in end-of-life planning discussions [50]. In addition, patients with unrealistic expectations of treatment outcomes may accept invasive and toxic treatments, which they would not have accepted when they had developed more realistic expectations. Discussing prognosis with the patient may help patients to develop a better understanding of the incurable nature of their disease [51].

Heterogeneity exists in characteristics influencing expectations. For example, physically more disabled patients were inclined to have more unrealistic expectations. Therefore, an individualized approach is essential in which the physician explores individual patient expectations and when unrealistic, subsequently tries to influence these expectations.

The incurable nature of metastatic spine disease may affect patient expectations after treatment which set them apart from the degenerative spine population. Although patients with metastatic spine disease often receive advanced cancer care, these patients may face unique challenges such as neurologic deficit and as such, their expectations may differ from those patients without spinal metastases. The treatment approach of patients with spinal metastases is often multidisciplinary (e.g., a medical or radiation oncologist, a spine surgeon, an oncology nurse), which may hamper consistent information disclosure. Therefore, more research is needed to gain insight into expectations of treatment outcomes in patients with spinal metastases and the best methods to instill appropriate or realistic expectations.

Conclusions

Patients tend to have overly optimistic expectations regarding pain and symptom relief, recovery and prognosis. Pretreatment discussion about the expected pain and symptom relief, recovery and prognosis may improve understanding of prognosis, and promote and manage realistic expectations, which, in turn, may lead to higher satisfaction with the treatment outcome and hence a higher quality of life.