Abstract
Study Design
Literature review with clinical recommendation.
Objective
A concise curation of the latest spine literature exploring the relationship between expectations and satisfaction for patients with metastatic spinal disease (MSD). Deliver recommendations to practicing clinicians regarding interpretation and utilisation of this evidence.
Methods
The latest spine literature in the topic of factors affecting the expectations of patients with MSD was reviewed and clinical recommendations were formulated. Recommendations are graded as strong or Conditional.
Results
5 articles were selected. Article 1: risk factors for the development of dissatisfaction from a cohort of 362 MSD patients. Strong recommendation to incorporate risk factor assessment when considering treatment. Article 2: systematic review assessing the relationship between pre-operative patient expectations and subsequent satisfaction in allied disciplines. Conditional recommendation to optimize patient expectation to positively modify patient satisfaction. Article 3: qualitative study of how clinicians, from different specialties, counsel patients with MSD pre-treatment. Strong recommendation to use a multidisciplinary approach. Article 4 qualitative study of how MSD patients experience their pre-treatment counselling and how that affected their appreciation of treatment success. Conditional recommendation to furnish patients with tailored, expected outcomes in the context of systemic progression. Article 5 Design and validation of a pre-treatment questionnaire specific to MSD. A conditional recommendation to incorporate this questionnaire in clinical and research MSD practice.
Conclusion
Patients with MSD are approaching end of life care and high levels of treatment satisfaction are crucial at this juncture. The role of expectation management and comprehensive counselling is critical.
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Introduction
Patient satisfaction is increasingly used as a patient centered outcome measure to monitor quality of care. Understanding the factors that determine patient satisfaction and adjusting any modifiable factors is therefore important. Surgery and radiotherapy have been demonstrated to be effective treatment modalities to maintain or improve health-related quality of life (HRQOL) of patients with symptomatic spinal metastases.1-4 Despite the effectiveness of these treatments, up to 23% of the patients report dissatisfaction with the outcomes of their treatment. 5
Patient expectations regarding the effect of surgery on their symptoms and functional abilities are important decision drivers treatment selection. Previous studies have shown that pre-treatment expectations and fulfillment of pre-treatment expectations were associated with post-treatment satisfaction and patient reported HRQOL.6-13 It’s therefore vital that patients understand the goals of treatment and have realistic expectations regarding the risks and benefits. This is especially important for patients with spinal metastases as the goal of treatment is palliative, rather than curative and therefore the goals and results of treatment must align with what patients hope and expect to achieve during their often-limited survival duration. Yet, patients with advanced stages of cancer tend to overestimate their life expectancy and often have unrealistic expectations regarding the effects of palliative treatments.14,15 Previous investigations have demonstrated that patients’ willingness to accept invasive treatments decreased significantly if patients understood that the treatment intent was palliative as opposed to curative. 15
AO Spine Knowledge Forum Tumor is a multidisciplinary international expert group dedicated to the betterment of outcomes in spinal oncology treatment. One of the tasks is to bring concepts being developed outside spinal pathologies and introduce them to the spine community. One such concept focusses on progress being made in better understanding patient expectations and aspirations leading to more effective patient-physician communication regarding expectations and higher patient satisfaction with treatment experience and outcome. The present review of articles selected by this expert group summarizes and evaluates recent work performed themed to gain a better understanding of how clinicians set treatment expectations among patients with secondary spinal tumors, what outcomes these patients expected after treatment and describes the development of a novel patient expectation assessment instrument. This work indicates the need and opportunity for clinicians treating patients with spinal metastatic tumors to gain a better understanding of the patients being treated as well as to provide better alignment of treatment expectations.
The expert panel selected and reviewed the publications and agreed on the strength of recommendations to consider the findings of these papers in clinical and research fields of spinal oncology practice. Recommendations are dichotomously graded into strong and conditional based on the integration of scientific methodology and content expert opinion. This opinion considers experience and practical issues such as risks, burdens, costs, patient values and circumstances. This follows GRADE methodology for recommendations into clinical practice. 16
Article 1
Patient satisfaction with treatment outcomes after surgery and/or radiotherapy for spinal metastases. Versteeg AL, et al. Cancer. 2019 Dec 1;125(23):4269-4277. doi: 10.1002/cncr.32465.
Clinical Rationale
While the objective clinical benefits of the surgical and oncological treatments for spinal metastases are well established, none of the previously reported health-related quality of life (HRQOL) metrics explicitly surveyed patient satisfaction with their outcomes. In patient where palliation is the goal, satisfaction with treatment outcome serves as a key metric in evaluating treatment benefit. Administration of the Spine Oncology Study Group Outcomes Questionnaire (SOSGOQ2.0), that includes a question about patient satisfaction with their treatment outcome, to a large cohort of patients who underwent treatment of their metastatic spinal tumors provided the first opportunity to measure patient satisfaction in this patient population.
Study Summary
The study analyzed patient-reported outcomes among patients with spinal metastatic tumors enrolled in Epidemiology, Process and Outcomes of Spine Oncology [EPOSO] study. Patients were aged between 18-75 years and treated with surgery with or without radiotherapy (n = 231) or radiotherapy alone (n = 131) between August 2013 and February 2018. HRQOL was evaluated with the Numeric Rating Scale pain score, the 3-level version of the EuroQol 5-Dimension (EQ-5D-3L) instrument, and SOSGOQ2.0 at baseline and 6, 12, and 26 weeks after treatment. Item 21 of SOSGOQ2.0 asked patients: “Are you satisfied with the results of your spine tumor management?” and was measured on a 5-point scale.
Among patients who survived to the timepoints investigated, the survey response rates were 76% at 6 weeks and 74% at 12 weeks. At 12 weeks after treatment, 84% of 219 patients who underwent surgery with or without radiation and 77% of 132 patients treated with radiotherapy alone were satisfied with the results of their treatment outcomes. In the surgical cohort, 5% of the patients were dissatisfied with their treatment and dissatisfaction was associated with lower education level, discharge to home without family support, and intraoperative adverse events. Satisfied surgical patients had a significantly longer survival at 1-year postop compared to dissatisfied surgical patients. During follow-up, satisfied patients experienced greater improvements in almost all HRQOL domains and overall HRQOL in comparison with nonsignificant improvements in dissatisfied patients. Patients who were dissatisfied after surgery demonstrated worse mental health, social function, physical function, and pain scores at 12 weeks after surgery.
In the radiation therapy alone cohort, 5% of patients were dissatisfied and these patients were more likely to live alone. There was no survival difference at 1 year after treatment between dissatisfied and satisfied radiotherapy alone patients. In the surgical cohort, patients who presented with more severe leg weakness had higher probability of postoperative dissatisfaction. Satisfied patients experienced a bigger improvement in HRQOL compared to dissatisfied patients. After radiotherapy, satisfied patients had a decrease in pain intensity, while dissatisfied patients experienced increased pain. Satisfied patients also experienced stable or improved HRQOL after radiotherapy. Adverse events after surgery or radiotherapy were not associated with dissatisfaction.
Methodological Review
This study was an observational multi-center international study with an impressive response rates for patients at 12 weeks post-treatment. The authors did not attempt a direct comparison between radiotherapy alone and surgery with or without radiation, as the number of levels treated and other baseline characteristics between study groups were not equal.
Survey-based studies carry the intrinsic limitation of participation, and the authors honestly addressed limitations regarding patient drop-out, and reported that the overall levels of dissatisfaction may have been higher if the patients who died were included in the study. Furthermore, ceiling and floor effects may have led to the appearance of higher satisfaction rate and lower dissatisfaction rate. Overall, this was a well conducted study with excellent participation.
Recommendation for Integrating Into Your Clinical Practice
This study identified pre-treatment and post-treatment parameters that placed patients at risk for dissatisfaction with treatment. The work provides data for treatment teams to facilitate identification of patients at risk for dissatisfaction with treatment, possibly providing opportunities to support and counsel these patients and merits a strong recommendation to be incorporated into clinical practice. The authors also found that the majority of patients with metastatic spinal tumors treated were satisfied with the outcomes of surgery and/or radiotherapy.
Article 2
Pre-treatment expectations of patients with spinal metastases: what do we know and what can we learn from other disciplines? A systematic review of qualitative studies. Gal R, et al. BMC Cancer. 2020 Dec 9;20(1):1212. doi: 10.1186/s12885-020-07683-7.
Clinical Rationale
Pre-treatment patient expectations in various clinical settings have been shown to affect post-treatment HRQOL and patient satisfaction. However, little is known about pre-treatment expectations in the metastatic spine population. Several studies have examined patient expectations among patients who underwent surgery for the treatment of non-oncologic spinal disorders and among patients with advanced cancer, and both populations may share characteristics with metastatic spinal tumor patient population. Therefore, to gain insights into how best study and address treatment expectations of patients with metastatic spinal tumors, Gal et al performed a systematic literature review to assess pre-treatment expectations in patients who underwent spine surgery for degenerative pathology treatment and in patients with advanced cancer.
Study Summary
This systematic review analyzed pre-treatment patient expectations from 17 studies of patients who underwent spine surgery and 14 studies of patients with advanced metastatic cancer, many of whom were undergoing palliative radiation therapy. The article clearly identified 3 synthesized findings. The authors reported that spine surgery patients were overly optimistic regarding pain and symptom relief after surgery, underestimated postoperative functional disability, and overestimated the speed/extent of their recovery and ability to return to work. Spine surgery patients also did not feel appropriately counseled about the extent of their surgery and recovery. Patients with advanced cancer were overly optimistic regarding their estimated survival and potential for cure when in palliative situations. Major findings from these cohorts and qualitative studies were graded as credible or unequivocal.
The authors concluded that (1) patients tend to be overly optimistic about their outcomes; (2) that pre-treatment counseling may improve patient understanding of prognosis, manage expectations, and may lead to better perceived outcomes; and (3) that patient expectations were influenced by various factors including age, health condition, and socioeconomic status.
Methodological Review
This systematic review followed PRISMA guidelines and was prospectively registered on PROSPERO. A comprehensive literature search was performed with the assistance of a university librarian looking for articles from 2000-2019 using MEDLINE, EMBASE, and PsycINFO. One criticism is that other databases such as the SCOPUS and Cochrane Library could have also been searched. The initial search strategy generated 7343 articles, of which 92 articles underwent full-text review and ultimately 31 articles were included (17 for spine surgery patients and 14 for patients with advanced cancer). Two authors screened articles, extracted data, and assessed methodological quality. A third author served as a tiebreaker in the event of disagreement between the initial reviewers.
The objectives of the study were clearly defined: to assess patient expectations for surgical treatment of degenerative spinal disorders and for systemic therapy for treatment of advanced cancer and then draw parallels with the spinal metastatic disease patient population. The study performed a meta-aggregation of the data presented in the included studies according to an established protocol. Qualitative studies were assessed by the CASP (Critical Appraisal Skills Programme) tool to indicate the validity of the reported results. Overall, this is a well-done systematic review with clearly defined objectives and methodology.
Recommendation for Integrating Into Your Clinical Practice
The authors conducted a thorough systematic review and synthesized the data from the included studies to learn how previously published literature can guide the study of treatment expectations among patients with metastatic spinal tumors. Understanding and addressing patient expectations can improve resulting HRQOL outcomes and patient satisfaction with treatment, which is beneficial to patients, surgeons, hospital systems, and payers. While there was expected heterogeneity in the numbers and diagnoses of patients included in this systematic review, the quality of the data from the included studies was homogeneously high. This study supports a conditional recommendation that coordinated clinical teams should explicitly counsel patients about what to expect after treatment to avoid overly optimistic patient expectations regarding their post-operative course.
Article 3
Expectations of treatment outcomes in patients with spinal metastases; what do we tell our patients? A qualitative study. Versteeg AL, et al. BMC Cancer. 2021 Nov 23;21(1):1263. doi: 10.1186/s12885-021-08993-0.
Clinical Rationale
The authors of this paper interviewed clinicians directly involved in the care of patients with metastatic spinal disease to learn about how they manage patient expectations and their insight into actual patient expectations.
Study Summary
Surgeons indicated that they have limited amount of time to counsel patients during outpatient consultations and when patients require emergency surgery, while radiation oncologists and physiatrists had adequate time. The majority of surgeons and radiation oncologists discussed the palliative intent of treatment but did not discuss overall prognosis, citing difficulty in estimating prognosis and their reliance on medical oncologists to address this topic. The medical oncologists generally explained to patients the meaning of “palliative treatment” and addressed life expectancy with the select patients who were open to hearing this information. Surgeons and radiation oncologists discussed risks of their proposed treatments, as well as specialty-specific alternatives, but very few physicians discussed the possibility of no treatment. Most physicians stated that they recognized the importance of managing patient expectations but also noted that they almost never ask patients about their expectations. Only physiatrists indicated that they discussed recovery and treatment outcomes with patients. Most surgeons believed that patients had overly optimistic expectations about pain relief and the duration of the recovery period, but most clinicians also indicated that they intentionally provided vague information about the recovery due to the variability of patient trajectories.
Methodological Review
The authors used qualitative study design and followed the consolidated criteria for reporting qualitative research (COREQ). Individual semi-structured interviews were conducted in 2 tertiary spine centers in Canada and The Netherlands, that included various clinical specialists (spine surgeons, radiation oncologists, medical oncologists and rehabilitation) involved in the care of patients with spinal metastases. An interview guide using broad and open questions was used to learn about what information clinicians discussed with the patients about treatment options and planned treatment, what they told patients about expected treatment outcome and how clinicians perceived patient expectations. Twenty-two interviews were conducted until data saturation was noted. Inductive thematic analysis was conducted on the recorded interviews to register topics and overarching themes.
A strength of this study is the qualitative study design as it allowed for an in-depth understanding of the communication practices of health care providers involved with metastatic spine patients. The study is further strengthened by the variety in background of the interviewees representing different medical specialties involved in the care of patients with spinal metastases, but also representing different geographical practice regions. The study has limited generalizability as it reflects the practice of only 2 institutions.
Recommendation for Integrating Into Your Clinical Practice
This study highlighted gaps in the patient-physician communication. Most physicians managed expectations of patients by providing general information regarding treatment and treatment outcomes that was not specific to the patient. While physicians acknowledged the importance of patient expectations, these were not systematically directly evaluated and addressed in their clinical practice. Considering the speciality-based variability of expectation-setting capabilities and practices found, this study supports a strong recommendation for multidisciplinary patient evaluation and counselling to be incorporated into clinical practice so as to better address patient expectations.
Article 4
Patient Expectations About Palliative Treatment for Symptomatic Spinal Metastases: A Qualitative Study. Gal R, et al. Value Health. 2023 Jan;26(1):4-9. doi: 10.1016/j.jval.2022.05.001. Epub 2022 Jun 4.
Clinical Rationale
This qualitative study evaluated pre-treatment patient expectations and post-treatment patient experiences among patients with spinal metastatic tumors.
Study Summary
A total of 24 patients with symptomatic spinal metastases who were scheduled to undergo palliative surgery and/or radiation treatment were enrolled, with 5 patients not completing their post-treatment interviews secondary to poor health. Of the patients interviewed, 42% had previously undergone treatment of spinal metastatic disease, 42% had multilevel spinal disease, 54% were planned for a surgical intervention, 50% underwent a spine surgery and radiation treatment, and 38% underwent radiation alone. With respect to their educational level, 50% of patients had primary or secondary school level of education and 46% had a college level of education. Most patients had either multilevel disease (42%) or thoracic disease (38%).
While patients felt they were well informed about treatment procedures and potential complications, they thought they were not or were minimally informed about expected treatment outcomes. Most patients believed that pain relief served as 1 of the treatment goals and expected a significant reduction or complete resolution of pain. Patients formed their treatment expectations based on their conversations with the treating physician(s). Patients generally understood that treatment was not curative but lacked insight into the impact of treatment on life expectancy. Most patients stated that life expectancy topics were not discussed with them by their surgeons or radiation oncologists and some patients preferred to avoid discussing this topic. The expectations regarding recovery time varied from days to up to 4 months. For most patients, their pretreatment expectations were partially concordant with treatment outcomes, most experienced the expected pain reduction and nobody experienced unexpected treatment outcomes. Patients also expressed a sense of being overwhelmed by the volume of information provided to them.
Methodological Review
This study was a prospective qualitative study utilizing individual, semi-structured interviews with open-ended questions 1 week prior to and 6 weeks after palliative surgical and/or radiation treatment of spinal metastatic disease. Pre-treatment interviews focused on patient outcome expectations, physician information provided, patient perception of that information, and the impact of close relatives on patient expectations. Post-treatment interviews focused on a review of pre-treatment patient expectations, the extent to which pre-treatment expectations were or were not fulfilled, and patient perception of the completeness of the physician’s information regarding their treatment. Patients were enrolled at 2 sites (one in the Netherlands with Dutch speakers, one in Canada with English speakers) and were enrolled until data saturation. All interviews were recorded, subsequently transcribed, and then analyzed for content.
While this was a well-conducted study, several limitations exist. Five out of 24 (21%) of those patients did not perform their post-treatment interview due to poor health. Minimal patient demographic information was provided, thereby limiting the generalizability of the study results to other more diverse populations. Patients were invited to participate in the study by their treating physicians thus risking potential selection bias. Lastly, no information regarding the quality or content of the pre-treatment counseling and how this correlated with patient understanding was presented.
Recommendation for Integrating Into Your Clinical Practice
The authors conducted a well-designed and thorough open-ended interview of patients undergoing treatment for their spinal metastatic disease. Their cohort of patients demonstrated that patients felt that they were only minimally or not at all informed about expected treatment outcome. However, post-treatment most patients reported that their outcome partially matched their expectations. Based on the methods and results of this study, this study merits a conditional recommendation for the incorporation of information regarding patient-specific post-treatment symptom outcome, expected recovery, and prognosis/life expectancy to be incorporated in pre-treatment counseling. The delivery of said counselling may need to be staged so as to avoid overwhelming the patient.
Article 5
Introducing the New Patient Expectations in Spine Oncology Questionnaire. Versteeg AL, et al. Neurosurgery. 2023 Dec 1;93(6):1331-1338. doi: 10.1227/neu.0000000000002587.
Clinical Rationale
The discrepancy between what physicians consider realistic treatment outcome expectations for patients with spinal metastatic tumors and the actual patient expectations was previously established. However, an instrument or method to better align patient treatment expectations with what treating physicians consider reasonable expectations was lacking. Versteeg et al designed the Patient ExPectations in Spinal Oncology (PEPSO) questionnaire, which is an instrument developed to systematically evaluate the patient expectations regarding the outcomes of surgery and/or radiation therapy for spinal metastases.
Study Summary
This qualitative study was conducted in 2 tertiary spine centers in Canada and The Netherlands and involved 3 main phases. A total of 24 patients and 22 physicians were enrolled in phase I of the study to gather insights into patient expectations and physician communication practices regarding treatment outcomes through pre-treatment and post-treatment semi-structured interviews. Phase II resulted in a preliminary questionnaire with 34 items based on the themes identified in the previous phase. Final content validation and refinement were accomplished in phase III of the study via one-on-one cognitive interviews with sixteen additional patients, resulting in the final version of the PEPSO questionnaire with 22 items. This questionnaire consists of 3 sections. The first section addresses the patient’s expectations of treatment outcomes with 13 questions. The questions cover expectations related to pain, analgesia requirements, daily and physical functioning, and overall quality of life and the expected time of recovery. The second section includes 3 questions to assess how the patient feels about the prognosis. The last section addresses the patient consultation with the physician using 6 questions. Further, 2 separate versions of the PEPSO questionnaire were tailored for patients awaiting surgery or radiation therapy.
Methodological Review
The study design included the development and validation of the PEPSO questionnaire items based on input from patients, family members, and physicians using a rigorous international qualitative multiphase research methodology. The study procedures and phases were laid out clearly with well-described and reported outcomes. The questionnaire was tailored specifically to those with spinal metastases undergoing surgical and/or radiation therapy in order to understand their expectations. A diverse pool of patients was included in this study, ensuring diverse tumor histology and different management modalities.
However, the sample size of this study was small. There were 24 patients in the phase I development and only 10 patients in the phase III validation. The content saturation point was subjectively decided when investigators felt they were not gaining more from the interviews. Moreover, the physicians and patients were from 2 institutions, which may limit the generalizability of the questionnaire and its application in other healthcare settings.
The psychometric properties of the questionnaire, including its reliability to evaluate the consistency of the responses (e.g., Cronbach’s alpha) and validity to ensure the accuracy of the questionnaire in measuring patient expectations, were not assessed in this study. Thus, the questionnaire validation relative to other established measures is recommended, including comparing its effectiveness, comprehensiveness, and ease of use against other tools. Also, validation work for the applicability of the PEPSO questionnaire across different cultures and languages may be warranted.
Overall, the study was well-conducted and had a rigorous design with a clear rationale behind the development of the PEPSO questionnaire items. However, patient expectations are inherently subjective, and their measurement can be challenging. Thus, the ability of this questionnaire to capture the nuances of patient expectations will need to be evaluated.
Recommendation for Integrating Into Your Clinical Practice
The authors conducted a well-designed multiphase study representing a crucial step forward in personalized patient care in the spine oncology field. The PEPSO questionnaire provides care and research teams a standardized evaluation tool of patient expectations regarding the expected outcomes after surgery and/or radiation therapy. This approach not only enhances the patient-physician relationship but also facilitates optimizing treatment outcomes, better understanding patient perspectives, and achieving patient satisfaction, which are essential components of quality care in oncology. However, given some limitations in the study design and execution, we believe this study merits a conditional recommendation for the PEPSO questionnaire to be incorporated into clinical practice. Future studies evaluating the validity, reliability, and cross-cultural generalizability of the PEPSO questionnaire will be required to strengthen the recommendation for incorporation of PEPSO into clinical practice.
Discussion
The Need for Better Understanding and Communication of Patient Experience
When considering the role of surgery for a patient group there is a natural tendency for surgeons to focus on the technical aspects of the procedure and the associated complications. Although these aspects are important to convey, the contextual elements on a patient-specific level, are critical components of patient education and decision support. Shifts in consenting practice led by legal precedent 17 and by patient groups have witnessed a greater weight being placed on understanding the patient values at this juncture.18,19 In cases of spinal metastases, we are faced with patients who are at a very complex and challenging time of their lives. They are almost certainly facing limited life expectancy; many will have had or soon to have had adjuvant therapies all of which can carry side effects. We know that despite consent processes many, especially the less educated, fail to grasp some of the core features of surgical intervention and recovery. 20 This is not a failure of this patient group; it behoves us and our teams to create an environment and conversation that enables all patients with capacity to make an informed decision especially in the elective or semi-elective setting. 21
When delivering this complex set of information there is clearly a role for coordinated multidisciplinary clinical teams to facilitate patient choice and provide multidimensional expectation setting. However, this may not be available or even appropriate in the emergency setting (e.g., acute symptomatic cord compression) when clinical treatment decisions with severe implications may need to be made quickly. The onus then must fall on the treating physician to convey expectation counselling.
Summary of Methodological Quality
The 5 publications included in this review article employed a variety of study designs to answer their respective research questions. The first study utilized a survey to collect data from patients. This type of quantitative study can provide valuable data on a variety of measured outcome parameters. Considering the fragile population under study, achieving response rates of around 75% was impressive bolstering both results and conclusions of the study. The second study used a systematic review of the literature to find new data by synthesizing and pooling previously published data. Since studies for target patient population have not been published, he authors cleverly filled the knowledge gap of patient expectations in metastatic spinal disease by studying this topic in adjacent/similar fields of practice where more information was available.
The subsequent studies utilized qualitative research methods that are generally less frequently used in spine research. In the third study physicians were interviewed in a (semi-)structured way to learn the communication practice of physicians when counseling patients with spinal metastases. This study design is well suited to obtain in-depth information through personal interaction but can be difficult to conduct as both interviewer and interviewee need to be well prepared to yield good results. The fourth study also used qualitative interviewing, this time with patients as interviewees. Although extremely valuable information was collected, the study also showed that this method can be difficult, especially since participants were often in poor physical condition. The last study used a multiphase approach to design and validate a new questionnaire to be used in spine oncology. Although the method can be considered very solid, the input from participants used to develop the questionnaire remains subjective and it can be difficult to determine if and when a broadly generalizable and valid product has been created.
All studies were well designed and executed satisfactory using established guidelines where appropriate (e.g., COREQ and PRISMA) and resulted in in-depth insights, but some limitations remain. The relatively small numbers of study subjects and centers involved limit generalizability of some results. Furthermore, as patient expectations are likely tied to cultural customs and habits, the inclusion of patients from only 2 countries may limit translation to other nationalities and cultures. These main shortcomings could, however, be addressed relatively easily in future studies by including more subjects from a more diverse background/ethnicity. Overall, the studies included are deemed of high methodological quality and can be used as examples/templates for future research in this field.
Content Summary
The work presented above represents a methodical approach to knowledge gap identification and research. The authors measure the variance in patient satisfaction and dissatisfaction with the treatment, thereby defining an opportunity for care improvement. They subsequently specifically studied how clinicians addressed patient expectations regarding post-treatment functional recovery, pain relief, treatment goals and survival when speaking with their patients and how patients perceived and understood this information. Significant gaps and variability in the breadth of information clinicians communicate were identified. Furthermore, the authors found discrepancies between what patients expected and what treating clinicians thought were reasonable goals. Considering the notable gaps in alignment and understanding of patient treatment expectations, the authors identified the need for a standardized instrument to measure and define patient expectations. PEPSO was developed to address these gaps through facilitating patient expectations research and utilization in practice to gain better understanding of what our patients actually expect after treatments proposed by us.
Practice Recommendations
The publications included in the current review represent a significant contribution toward better understanding of patients with metastatic spinal tumors and provide guidance for clinical and research practice improvement. These studies provide strong support for deeply and thoroughly considering what we tell our patients about the goals of proposed treatment and setting appropriate expectations about recovery and treatment outcomes.
The data support: (1) Integration of coordinated multidisciplinary patient assessment and counselling to adequately educate patients about their oncologic disease trajectory, surgical, radiotherapy and systemic therapy options and the expected post-treatment recovery. (2) Considering the emphasis placed by patients on post-treatment pain relief and functional status, clinicians should make every attempt to provide patient-specific predictions about these parameters. The presented evidence suggests that these efforts would lead to better alignment of patient and clinician expectations facilitating informed patient decisions and higher treatment satisfaction. (3) PEPSO represents a promising instrument for learning about patient expectations and can already be integrated into research and clinical practice. The questionnaire for surgery and for radiation therapy can be downloaded on the AO Foundation website: PEPSO for Surgery; PEPSO for Radiation Therapy.22,23
Footnotes
Declaration of Conflicting Interests
The author(s) received no financial support for the research, authorship, and/or publication of this article. Administrative support was provided by AOSpine.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was organized by AO Spine through the AO Spine Knowledge Forum Tumor, a focused group of international spine tumor experts. AO Spine is a clinical division of the AO Foundation, which is an independent medically-guided not-for-profit organization. Study support was provided directly through AO Network Clinical Research.
