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Introducing the New Patient Expectations in Spine Oncology Questionnaire. BACKGROUND AND OBJECTIVES: It has been hypothesized that a discrepancy between pretreatment expectations and perceived outcomes is a significant source of patient dissatisfaction. Currently, there is lack in understanding and tools to assess patient expectations regarding the outcomes of treatment for spinal metastases. The objective of this study was therefore to develop a patient expectations questionnaire regarding the outcomes after surgery and/or radiotherapy for spinal metastases. METHODS: A multiphase international qualitative study was conducted. Phase 1 of the study included semistructured interviews with patients and relatives to understand their expectations of the outcomes of treatment. In addition, physicians were interviewed about their communication practices with patients regarding treatment and expected outcomes. In phase 2, items were developed based on the results of the interviews in phase 1. In phase 3, patients were interviewed to validate the content and language of the questionnaire. Selection of the final items was based on feedback from patients regarding content, language, and relevance. RESULTS: In phase 1, 24 patients and 22 physicians were included. A total of 34 items were developed for the preliminary questionnaire. After phase 3, a total of 22 items were retained for the final version of the questionnaire. The questionnaire is divided into 3 sections: (1) patient expectations regarding treatment outcomes, (2) prognosis, and (3) consultation with the physician. The items cover expectations related to pain, analgesia requirements, daily and physical function, overall quality of life, life expectancy, and information provided by the physician. CONCLUSION: The new Patient Expectations in Spine Oncology questionnaire was developed to evaluate patient expectations regarding the outcomes after treatment for spinal metastases. The Patient Expectations in Spine Oncology questionnaire will allow physicians to systematically assess patient expectations of planned treatment and thus help guide patients toward realistic expectations of treatment outcome.

An international qualitative and quantitative multiphase research study was conducted to develop the Patient ExPectations in Spinal Oncology (PEPSO) questionnaire. After institutional review board approval, this study was initiated in 2 tertiary spine centers, located in Canada and The Netherlands. Written informed consent was obtained from participating patients, family members, and health care providers. Individual semistructured interviews were conducted with patients, family members, and health care providers involved in the care of patients with spinal metastases. Patients were eligible to participate if they required surgery and/or radiotherapy for the treatment of symptomatic spinal metastases. Patients with a diagnosis of primary spinal or spinal cord tumor were excluded. Individuals undergoing repeat treatment were also included to permit transferability of the questionnaire in patients who may need repeat surgery or radiation. Patients were excluded if they required emergency intervention that prohibited scheduling of an interview. Close family members were also invited to participate in individual semistructured interviews. Health care providers were invited to participate if they were directly involved in the management of patients with spinal metastases.11,12

d if they required emergency intervention that prohibited scheduling of an interview. Close family members were also invited to participate in individual semistructured interviews. Health care providers were invited to participate if they were directly involved in the management of patients with spinal metastases.11,12 Patient and family member interviews were conducted pretreatment (0-7 days) and post-treatment (6 weeks +/−1 week) using a semistructured interview guide with broad and open-ended questions. Patients and family members were asked about their expectations regarding treatment outcomes and the information provided by physicians. In the post-treatment interviews, patient experiences and fulfillment of pretreatment expectations were discussed. Health care providers were interviewed once and were asked broad and open-ended questions regarding the information they provide to patients and how they verify patient expectations. Patients, family members, and health care providers continued to be enrolled until no new information was abstracted from the interviews (content saturation).11,12 The interviews were analyzed using a standardized qualitative thematic analysis.13 Two researchers independently analyzed the interview scripts. Using an iterative process, interview data were grouped into codes. The codes were then categorized into subthemes and overarching themes. Detailed methods and results based on the Consolidated Criteria for Reporting Qualitative Research guidelines from the patient and physician interviews were previously reported.11,12,14

g an iterative process, interview data were grouped into codes. The codes were then categorized into subthemes and overarching themes. Detailed methods and results based on the Consolidated Criteria for Reporting Qualitative Research guidelines from the patient and physician interviews were previously reported.11,12,14 Two researchers independently developed items and the response scale for the preliminary version of the questionnaire based on the subthemes and themes identified in the first phase of the study. All items were initially developed in English. Items were phrased in multiple ways using terminology used by patients in the first phase of the study. The items and the response scale options for the preliminary version of the questionnaire were selected after a consensus meeting with the research team including experienced qualitative researchers, physicians, and a language specialist. The preliminary English version of the PEPSO questionnaire was translated to Dutch involving an expert committee including a language specialist.

sion of the questionnaire were selected after a consensus meeting with the research team including experienced qualitative researchers, physicians, and a language specialist. The preliminary English version of the PEPSO questionnaire was translated to Dutch involving an expert committee including a language specialist. An additional sample of patients was enrolled in this study to validate the content and language used in the questionnaire. Individual cognitive interviews with patients were conducted to investigate the response process. Patients were asked whether items were clearly worded and whether they felt items were relevant to them. In addition, patients were asked to clarify their responses to evaluate whether patients' answers reflected the construct of interest. Detailed summary notes were taken during the cognitive interviews and analyzed independently by 2 researchers. The items and response scale were revised during a meeting with the research team based on the results of the cognitive interviews. Finally, another sample of patients was enrolled in the study to verify the revised item pool and response scale.

Individual semistructured interviews were conducted with patients, family members, and health care providers involved in the care of patients with spinal metastases. Patients were eligible to participate if they required surgery and/or radiotherapy for the treatment of symptomatic spinal metastases. Patients with a diagnosis of primary spinal or spinal cord tumor were excluded. Individuals undergoing repeat treatment were also included to permit transferability of the questionnaire in patients who may need repeat surgery or radiation. Patients were excluded if they required emergency intervention that prohibited scheduling of an interview. Close family members were also invited to participate in individual semistructured interviews. Health care providers were invited to participate if they were directly involved in the management of patients with spinal metastases.11,12

Two researchers independently developed items and the response scale for the preliminary version of the questionnaire based on the subthemes and themes identified in the first phase of the study. All items were initially developed in English. Items were phrased in multiple ways using terminology used by patients in the first phase of the study. The items and the response scale options for the preliminary version of the questionnaire were selected after a consensus meeting with the research team including experienced qualitative researchers, physicians, and a language specialist. The preliminary English version of the PEPSO questionnaire was translated to Dutch involving an expert committee including a language specialist.

An additional sample of patients was enrolled in this study to validate the content and language used in the questionnaire. Individual cognitive interviews with patients were conducted to investigate the response process. Patients were asked whether items were clearly worded and whether they felt items were relevant to them. In addition, patients were asked to clarify their responses to evaluate whether patients' answers reflected the construct of interest. Detailed summary notes were taken during the cognitive interviews and analyzed independently by 2 researchers. The items and response scale were revised during a meeting with the research team based on the results of the cognitive interviews. Finally, another sample of patients was enrolled in the study to verify the revised item pool and response scale.

A total of 24 patients were enrolled between November 2018 and May 2020, 13 patients were scheduled to undergo surgery with or without adjunctive radiation therapy, and 11 patients were scheduled for treatment with radiotherapy alone. The mean age was 59.5 years (SD = 15.0), and 58% of the patients were male. Before treatment, all patients experienced spinal pain and limitations in daily activities and physical functioning. Patients commonly reported that they felt minimally or not informed by their physicians regarding expected treatment outcomes. Furthermore, patients stated that they felt generally overwhelmed by the information provided by their physicians. Expected treatment outcomes indicated by patients include improvements in pain, daily functioning, physical functioning, and decreased use of analgesics. In addition, patients mentioned a wide range of expected recovery times and goals of treatment. A total of 22 physicians were enrolled, including spine surgeons, radiation and medical oncologists, and physiatrists. Physicians indicated the importance of patient expectations but acknowledged that they mostly fail to verify patients' expectations regarding treatment outcomes. Physicians also reported that patients are generally too optimistic regarding treatment outcomes and often underestimate the recovery time. Importantly, most physicians also noted that they believe a substantial number of patients do not fully understand the palliative treatment intent.

ns regarding treatment outcomes. Physicians also reported that patients are generally too optimistic regarding treatment outcomes and often underestimate the recovery time. Importantly, most physicians also noted that they believe a substantial number of patients do not fully understand the palliative treatment intent. Items for the preliminary version of the questionnaire were based on the overarching themes and subthemes identified during the interviews with patients, family members, and health care providers. Items were reviewed and selected during a consensus meeting with the research team, resulting in a preliminary version of the questionnaire which included 34 items. The questionnaire was initially divided into 4 sections: (1) consultation with the physician (15 questions), (2) patient expectations regarding outcomes (11 questions), (3) timeline of expectations (4 questions), and (4) life expectancy (4 questions). Likert response options were assigned for all questions except for the ones regarding life expectancy. The life expectancy questions were assigned individual response options. Ten patients were enrolled to verify the content, relevance, and language of the items. One-on-one cognitive interviews were conducted with patients who were either scheduled to undergo surgery and/or radiation therapy or had recently finished treatment.

Items for the preliminary version of the questionnaire were based on the overarching themes and subthemes identified during the interviews with patients, family members, and health care providers. Items were reviewed and selected during a consensus meeting with the research team, resulting in a preliminary version of the questionnaire which included 34 items. The questionnaire was initially divided into 4 sections: (1) consultation with the physician (15 questions), (2) patient expectations regarding outcomes (11 questions), (3) timeline of expectations (4 questions), and (4) life expectancy (4 questions). Likert response options were assigned for all questions except for the ones regarding life expectancy. The life expectancy questions were assigned individual response options. Ten patients were enrolled to verify the content, relevance, and language of the items. One-on-one cognitive interviews were conducted with patients who were either scheduled to undergo surgery and/or radiation therapy or had recently finished treatment. From the 34 items in the preliminary version, 22 items were retained in the final version of the PEPSO questionnaire (Figure). Items were retained if they were endorsed by patients and were considered clinically relevant. Several items that addressed similar themes but with alternative wording were either combined or omitted based on patient feedback. The final questionnaire is divided into 3 parts: (1) patient expectations of treatment outcomes (13 questions), (2) prognosis (3 questions), and (3) consultation with my physician (6 questions). Depending on the timing of questionnaire administration (preconsultation or postconsultation with their physician), part C may be administered or omitted.

vided into 3 parts: (1) patient expectations of treatment outcomes (13 questions), (2) prognosis (3 questions), and (3) consultation with my physician (6 questions). Depending on the timing of questionnaire administration (preconsultation or postconsultation with their physician), part C may be administered or omitted. Preoperative version of the Patient Expectation in Spinal Oncology questionnaire. For the items regarding expected outcomes, patients are asked “Please indicate what you expect (not hope), followed by when you expect (not hope) this change after surgery/radiation” to assess both the expected outcome and the timing of the expected outcome. The items cover expectations related to pain, analgesia requirements, daily and physical functioning, and overall quality of life. For the items regarding prognosis, patients are asked “The following statements are about how you feel about your prognosis. Please indicate which option(s) best describe your answer.” Items cover the overall goal of treatment, life expectancy, and chances for cure. For items regarding the consultation with their physician, patients are asked “To what extent, do you agree or disagree with these statements?” Items cover patient understanding regarding the information provided by the physician and shared decision making.

rall goal of treatment, life expectancy, and chances for cure. For items regarding the consultation with their physician, patients are asked “To what extent, do you agree or disagree with these statements?” Items cover patient understanding regarding the information provided by the physician and shared decision making. Based on the results of the interviews, 2 separate versions of the questionnaire were developed: one for patients waiting for surgical intervention (Figure) and another for patients waiting for radiotherapy (Appendix 1, http://links.lww.com/NEU/D883). The contents of the 2 versions are the same; however, the questionnaire instructions are different in that “surgery” is replaced with “radiation therapy,” and in the questions, “spine surgeon” is replaced with the “radiation oncologist.” Final wording of the items was checked with the patients and the research team. Finally, an additional 6 patients were enrolled for cognitive interviews to evaluate the revised questionnaire. Patients verified the content and the language, and no further adjustments were suggested. Table presents the baseline characteristics of patients included in the interviews in Phases 1 and 3. Appendix 2, http://links.lww.com/NEU/D884, presents information regarding the scoring of the questionnaire. Demographic Characteristics of Patients With Spinal Metastases that were Interviewed

Items for the preliminary version of the questionnaire were based on the overarching themes and subthemes identified during the interviews with patients, family members, and health care providers. Items were reviewed and selected during a consensus meeting with the research team, resulting in a preliminary version of the questionnaire which included 34 items. The questionnaire was initially divided into 4 sections: (1) consultation with the physician (15 questions), (2) patient expectations regarding outcomes (11 questions), (3) timeline of expectations (4 questions), and (4) life expectancy (4 questions). Likert response options were assigned for all questions except for the ones regarding life expectancy. The life expectancy questions were assigned individual response options.

Ten patients were enrolled to verify the content, relevance, and language of the items. One-on-one cognitive interviews were conducted with patients who were either scheduled to undergo surgery and/or radiation therapy or had recently finished treatment. From the 34 items in the preliminary version, 22 items were retained in the final version of the PEPSO questionnaire (Figure). Items were retained if they were endorsed by patients and were considered clinically relevant. Several items that addressed similar themes but with alternative wording were either combined or omitted based on patient feedback. The final questionnaire is divided into 3 parts: (1) patient expectations of treatment outcomes (13 questions), (2) prognosis (3 questions), and (3) consultation with my physician (6 questions). Depending on the timing of questionnaire administration (preconsultation or postconsultation with their physician), part C may be administered or omitted. Preoperative version of the Patient Expectation in Spinal Oncology questionnaire.

From the 34 items in the preliminary version, 22 items were retained in the final version of the PEPSO questionnaire (Figure). Items were retained if they were endorsed by patients and were considered clinically relevant. Several items that addressed similar themes but with alternative wording were either combined or omitted based on patient feedback. The final questionnaire is divided into 3 parts: (1) patient expectations of treatment outcomes (13 questions), (2) prognosis (3 questions), and (3) consultation with my physician (6 questions). Depending on the timing of questionnaire administration (preconsultation or postconsultation with their physician), part C may be administered or omitted. Preoperative version of the Patient Expectation in Spinal Oncology questionnaire. For the items regarding expected outcomes, patients are asked “Please indicate what you expect (not hope), followed by when you expect (not hope) this change after surgery/radiation” to assess both the expected outcome and the timing of the expected outcome. The items cover expectations related to pain, analgesia requirements, daily and physical functioning, and overall quality of life. For the items regarding prognosis, patients are asked “The following statements are about how you feel about your prognosis. Please indicate which option(s) best describe your answer.” Items cover the overall goal of treatment, life expectancy, and chances for cure. For items regarding the consultation with their physician, patients are asked “To what extent, do you agree or disagree with these statements?” Items cover patient understanding regarding the information provided by the physician and shared decision making.

The Patient Expectations in Spine Oncology (PEPSO) questionnaire was developed to evaluate expectations regarding treatment outcomes for patients requiring surgery and/or radiation therapy for spinal metastases. The items in the PEPSO questionnaire were developed based on information provided by patients, family members, and health care providers using a rigorous qualitative research method. The PEPSO questionnaire is unique because it is the first instrument to evaluate expectations specific to patients with spinal metastases undergoing surgical and/or radiation therapy. Implementation of this instrument in the clinical setting may help to further improve patient-centered care for this population. The questionnaire provides both patients and physicians with an opportunity to discuss goals of treatment and adjust unrealistic outcome expectations whenever necessary. In addition, it will further enhance the shared decision making process because it allows for a more in-depth and tailored discussion on the effects of treatment on their symptoms. Finally, the questionnaire provides physicians and researchers with a standardized method to investigate patient expectations and compare these expectations with other patient-reported outcome measures, including HRQOL and patient satisfaction.

epth and tailored discussion on the effects of treatment on their symptoms. Finally, the questionnaire provides physicians and researchers with a standardized method to investigate patient expectations and compare these expectations with other patient-reported outcome measures, including HRQOL and patient satisfaction. Previously, Mancuso et al developed 2 questionnaires to evaluate patient expectations after lumbar and cervical spine surgery.15,16 The questionnaires evaluate symptom relief, return to normal physical function, resumption of daily activities, and psychosocial well-being.15,16 Despite these questionnaires being patient-derived and specific to patients requiring spinal surgery, it is important to acknowledge that patients with spinal metastases represent a vastly different patient population. First, patients with spinal metastases often have various concerns related to their advanced cancer diagnosis and its (systemic) treatment besides their spinal problems. By contrast, patients requiring surgery for a degenerative or deformity-related spinal condition may have other comorbidities, but at the time of treatment, their spinal condition is almost always their primary concern. Second, patients requiring spine surgery for non–cancer-related conditions generally have other goals of treatment, such as deformity correction, and improved pain and physical function yet on a different level as compared with patients with metastatic spinal disease. Finally, considering the palliative treatment intent for spinal metastases, it is important for patients to understand that the main goal of treatment is to improve or maintain HRQOL rather than altering their primary tumor course or life expectancy. These differences in treatment goals and outcomes are highlighted by the differences in the content of the items in the PEPSO questionnaire as compared with the questionnaires from Mancuso et al.

e main goal of treatment is to improve or maintain HRQOL rather than altering their primary tumor course or life expectancy. These differences in treatment goals and outcomes are highlighted by the differences in the content of the items in the PEPSO questionnaire as compared with the questionnaires from Mancuso et al. In keeping with the palliative treatment intent and often limited life expectancy of patients with spinal metastases, expectations regarding the timing of expected outcomes were included in the questionnaire. Previously, Weeks et al17 demonstrated that patients with cancer who believed they would survive at least 6 months were 2.6 times more likely to accept invasive treatments than comfort care. Considering the limited life expectancy associated with spinal metastases, patients should be well informed of the recovery process after surgery and radiation and of the time it takes for surgery and/or radiation therapy to affect their symptoms. The PEPSO questionnaire not only asks patients what they expect regarding the effect of treatment on their symptoms but also when they expect the effects to happen. Unrealistic expectations regarding recovery time and effect on their symptoms can therefore easily be identified and discussed with the patient.

symptoms. The PEPSO questionnaire not only asks patients what they expect regarding the effect of treatment on their symptoms but also when they expect the effects to happen. Unrealistic expectations regarding recovery time and effect on their symptoms can therefore easily be identified and discussed with the patient. With the movement toward value-based and patient-centered health care, patient-reported outcomes and patient satisfaction are increasingly being used to evaluate the effectiveness of cancer care. In a recent systematic review, Witiw et al7 demonstrated that a smaller discrepancy between expected treatment outcomes and actual perceived outcomes was the most significant predictor of patients' satisfaction after elective spinal surgery. Panda et al18 examined this “expectation-actuality discrepancy” in a group of 101 patients requiring cancer surgery for solid primary tumors. They found that across all health domains, patients expected better HRQOL than they actually experienced postsurgery. The results of both studies emphasize the importance of pretreatment discussion of outcomes and realigning expectations whenever necessary, as misalignment between expectations and experiences increases the risk of patient dissatisfaction and poorer patient-reported outcomes.

than they actually experienced postsurgery. The results of both studies emphasize the importance of pretreatment discussion of outcomes and realigning expectations whenever necessary, as misalignment between expectations and experiences increases the risk of patient dissatisfaction and poorer patient-reported outcomes. A strength of the PEPSO questionnaire, and this study, is that it was developed using rigorous qualitative research methodology. A heterogeneous patient population representing different primary tumor histology, varying life expectancy and different treatment regimens including treatment with surgery and/or radiotherapy, was included to enhance generalizability of results. Moreover, patients were interviewed using a semistructured interview guide pretreatment and post-treatment. This provided post-treatment patients the opportunity to comment on outcomes they had not considered pretreatment, but now deemed important, based on their experience, to discuss before commencing surgical or radiation therapy. Face and content validation of the items were secured by developing the items based on input from patients and by verifying the questions and content with repeat cognitive interviews. Finally, by including input from physicians involved in the care of patients with spinal metastases, the PEPSO questionnaire also reflects what health care providers encounter in daily practice.

eveloping the items based on input from patients and by verifying the questions and content with repeat cognitive interviews. Finally, by including input from physicians involved in the care of patients with spinal metastases, the PEPSO questionnaire also reflects what health care providers encounter in daily practice. Despite the multiple strengths of this study, there are some limitations. First, this study was conducted at 2 tertiary spine care centers and may not reflect the expectations of patients in other health care settings. However, considering the complexity of care for patients with metastatic spinal disease, most patients would be treated in tertiary care centers. A future study aimed to evaluate the validity and reliability of the questionnaire will also evaluate the cross-cultural generalizability of the PEPSO questionnaire. Second, the final cognitive interviews evaluating the content of the questionnaire had to be conducted through telephone due to COVID-19 measures preventing in-person interviews. The difference in interview modality may have influenced the responses of patients.

Despite the multiple strengths of this study, there are some limitations. First, this study was conducted at 2 tertiary spine care centers and may not reflect the expectations of patients in other health care settings. However, considering the complexity of care for patients with metastatic spinal disease, most patients would be treated in tertiary care centers. A future study aimed to evaluate the validity and reliability of the questionnaire will also evaluate the cross-cultural generalizability of the PEPSO questionnaire. Second, the final cognitive interviews evaluating the content of the questionnaire had to be conducted through telephone due to COVID-19 measures preventing in-person interviews. The difference in interview modality may have influenced the responses of patients.

In summary, we developed the PEPSO questionnaire to evaluate patient expectations regarding outcomes after surgery and/or radiotherapy for symptomatic spinal metastases. In addition, the questionnaire evaluates patient expectations around prognosis and understanding of the information provided by spine surgeons or radiation oncologists. A follow-up study is planned to determine the validity, reliability, and cross-cultural generalizability of the questionnaire. In the future, the PEPSO questionnaire will allow for standardized evaluation of patient expectations to facilitate a tailored discussion between physicians and patients regarding expected outcomes after treatment. Unrealistic outcome expectations can be identified and addressed before treatment, thereby reducing the gap between expected and experienced outcomes, ultimately improving patient satisfaction with outcomes of treatment.