Expectations of treatment outcomes in patients with spinal metastases; what do we tell our patients? A qualitative study

Abstract Background Realistic pre-treatment expectations are important and have been associated with post-treatment health related quality of life (HRQOL). Patient expectations are greatly influenced by physicians, as they are the primary resource for information. This study aimed to explore the communication practices of physicians regarding treatment outcomes for patients with spinal metastases, and physician experiences with patients’ pre-treatment expectations. Methods An international qualitative study using semi-structured interviews with physicians routinely involved in treating metastatic spine disease (spine surgeons, radiation and medical oncologists, and rehabilitation specialists) was conducted. Physicians were interviewed about the content and extent of information they provide to patients with spinal metastases regarding treatment options, risks and treatment outcomes. Interviews were transcribed verbatim and analyzed using a thematic coding network. Results After 22 interviews data saturation occurred. The majority of the physicians indicated that they currently do not establish patients’ pre-treatment expectations, despite acknowledging the importance of these expectations. Spine surgeons often believe that patient expectations are disproportionate. Physicians expressed they manage expectations by detailing the most common risks and providing a broad but nonspecific overview of treatment outcomes. While the palliative intent seems clear to the physicians, their perception is that the implications of a palliative treatment remains elusive to most patients. Conclusion This study highlights the current gap in patient-physician communication regarding expectations of treatment outcomes of patients with spinal metastases. These results warrant further research to improve communication practices and determine the effect of patient expectations on patient reported outcomes in this population.

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Editors’ perspectives on the peer-review process in biomedical journals: protocol for a qualitative study

BMJ Open ◽

10.1136/bmjopen-2017-020568 ◽

2018 ◽

Vol 8 (10) ◽

pp. e020568 ◽

Cited By ~ 4

Author(s):

Ketevan Glonti ◽

Darko Hren

Keyword(s):

Qualitative Study ◽

Peer Review ◽

Review Process ◽

Peer Review Process ◽

Scientific Output ◽

Structured Interviews ◽

Manuscript Review ◽

Biomedical Journals ◽

Wide Range ◽

Communication Practices

IntroductionDespite dealing with scientific output and potentially having an impact on the quality of research published, the manuscript peer-review process itself has at times been criticised for being ‘unscientific’. Research indicates that there are social and subjective dimensions of the peer-review process that contribute to this perception, including how key stakeholders—namely authors, editors and peer reviewers—communicate. In particular, it has been suggested that the expected roles and tasks of stakeholders need to be more clearly defined and communicated if the manuscript review process is to be improved. Disentangling current communication practices, and outlining the specific roles and tasks of the main actors, might be a first step towards establishing the design of interventions that counterbalance social influences on the peer-review process.The purpose of this article is to present a methodological design for a qualitative study exploring the communication practices within the manuscript review process of biomedical journals from the journal editors’ point of view.Methods and analysisSemi-structured interviews will be carried out with editors of biomedical journals between October 2017 and February 2018. A heterogeneous sample of participants representing a wide range of biomedical journals will be sought through purposive maximum variation sampling, drawing from a professional network of contacts, publishers, conference participants and snowballing.Interviews will be thematically analysed following the method outlined by Braun and Clarke. The qualitative data analysis software NVivo V.11 will be used to aid data management and analysis.Ethics and disseminationThis research project was evaluated and approved by the University of Split, Medical School Ethics Committee (2181-198-03-04-17-0029) in May 2017. Findings will be disseminated through a publication in a peer-reviewed journal and presentations during conferences.

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Home practice in Mindfulness for Psychosis groups: A systematic review and qualitative study

10.31234/osf.io/qyjc3 ◽

2020 ◽

Author(s):

Pamela Charlotte Jacobsen ◽

Twinkle Choksi ◽

Katherine Sawyer ◽

Cassia Maximen ◽

Emma Harding ◽

...

Keyword(s):

Systematic Review ◽

Qualitative Study ◽

Treatment Outcomes ◽

Community Care ◽

Home Practice ◽

Structured Interviews ◽

Core Component ◽

Record Data ◽

Study Participants ◽

The Relationship

Objectives: Regular home practice is considered a core component of mindfulness groups and may be associated with better treatment outcomes. This study aimed to 1) review the existing evidence on how much home practice people do in Mindfulness for Psychosis groups, and 2) explore participants’ experiences of the barriers and facilitators to completing home practice in a Mindfulness for Psychosis group using a qualitative study.Methods: In study 1, we conducted a systematic review of Mindfulness for Psychosis studies and extracted data on home practice rates. In study 2, we conducted semi-structured interviews with people who had completed a Mindfulness for Psychosis group (N=5) as part of their routine community care, specifically focusing on experiences of home practice.Results: Out of twenty-two studies included in the systematic review, only 4 reported any data on amount of home practice, and none examined the relationship between completion of home practice and treatment outcomes. In the qualitative study, participants described home practice as being difficult but important. Arising themes were similar to findings from previous (non-psychosis) studies suggesting that generic challenges are common, rather than being specific to psychosis.Conclusions: We recommend that future Mindfulness for Psychosis studies record data on home practice rates, in order to investigate any association between home practice and treatment outcome. Our qualitative findings suggest home practice can be a valued part of a Mindfulness for Psychosis group, and a normalising approach could be taken when and if participants encounter common challenges.

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Two studies from the JP Wilmot Cancer Center on the relationship of treatment, expectations, and race with post-treatment skin reactions reported by cancer patients

Journal of Clinical Oncology ◽

10.1200/jco.2006.24.18_suppl.18560 ◽

2006 ◽

Vol 24 (18_suppl) ◽

pp. 18560-18560

Author(s):

J. L. Ryan ◽

C. Figueroa-Moseley ◽

C. Bole ◽

J. T. Hickok ◽

L. K. Colman ◽

...

Keyword(s):

Cancer Patients ◽

Post Treatment ◽

Treatment Expectations ◽

Skin Reactions ◽

Local Study ◽

Spearman's Rho ◽

Spearman’S Rho ◽

Significant Difference ◽

Patient Reported ◽

Pre Treatment

18560 Background: Cancer patients may experience skin problems while undergoing treatment. Frequency of skin reactions may be influenced skin pigmentation and/or psychological factors. Methods: A Symptom Inventory (SI) completed by 411 cancer patients nationwide before and after treatment was analyzed to determine if treatment type, race (Black versus White), and pre-treatment expectations influenced post-treatment skin reactions. Subsequent analysis of a SI completed weekly for five weeks by 167 local patients receiving radiotherapy examined severity of reported skin reactions. Results: One-way between-group ANOVA, with Bonferroni correction, showed significantly more patients receiving radiotherapy had stronger expectations of skin problems (62%) compared to patients receiving chemotherapy (40%, p = 0.001) or chemotherapy plus radiotherapy (45%, p = 0.003). Overall, expectations did not correlate with patient reported skin problems post-treatment (Spearman’s rho = 0.02, p = 0.70). Likewise, a Kruskal Wallis test showed no significant difference in severity of skin reactions reported by patients receiving radiotherapy (n = 138) and/or chemotherapy (n = 273, p = 0.56). Severe skin problems were reported more frequently by 10/18 (56%) Blacks than 90/393 (23%) Whites (p = 0.001), although no significant difference was found between Blacks and Whites in their pre-treatment expectations of skin problems (p = 0.32). Further, pre-treatment expectations of skin problems did not influence post-treatment reporting of skin problems in Blacks (Spearman’s rho = −0.02, p = 0.93) or Whites (Spearman’s rho = 0.02, p = 0.65). Similarly, the local study showed that significantly more Blacks (38%) reported severe skin reactions at the treatment site than Whites (6%). Total radiation exposure was significantly related to the severity of skin problems reported by Blacks (Spearman’s rho = 0.90, p = 0.04), but not Whites (Spearman’s rho = −0.06 p = 0.52). Conclusions: Overall, Blacks reported more severe post-treatment skin problems than Whites. How this self-reported skin damage correlates with clinical findings remains to be determined. Supported by NCI PHS grants 1R25CA102618 and U10CA37420. No significant financial relationships to disclose.

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What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-021-00299-w ◽

2021 ◽

Vol 5 (1) ◽

Author(s):

Harpreet Chhina ◽

Anne F. Klassen ◽

Jacek A. Kopec ◽

John Oliffe ◽

Christopher Iobst ◽

...

Keyword(s):

Qualitative Study ◽

Conceptual Framework ◽

Lower Limb ◽

Outcome Measure ◽

Treatment Options ◽

Patient Reported Outcome ◽

Complication Rates ◽

Patient Reported Outcome Measure ◽

Patient Reported ◽

Limb Deformities

Abstract Background Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb deformities often have physical limitations due to gait irregularities and pain. The differences in the appearance and function of their lower limbs can discourage participation in social, recreational and leisure activities, which may result in behavioural, emotional, psychological and social adjustment problems. The health-related quality of life (HRQL) of these children is often impacted due to the factors discussed above, as well as by the complex surgical procedures. Surgical treatment options for limb deformities in children vary from limb lengthening and reconstruction to amputation. The lack of evidence demonstrating superiority of either treatment options and their effect on HRQL limits the ability of healthcare providers to counsel families on the best evidence-based treatment option for them. This manuscript describes the international qualitative study which guided the development of a new patient-reported outcome measure (PROM). Individual semi-structured face-to-face interviews with children with lower limb deformities and their parents were conducted at five sites: Canada (2 sites), Ethiopia, India and the USA. Results Seventy-nine interviews were conducted at five international sites. Five main themes emerged from the qualitative interviews and formed the basis of the conceptual framework. These themes were: 1) appearance, 2) physical health, 3) psychological health 4) school and 5) social health. Conclusions Lower limb deformities have a substantial impact on the HRQL of children. The concepts of interest identified in our study were similar across children from all countries. The conceptual framework guided the development of outcome scales specific to these patients. The information about the impact of various treatment options on the HRQL of children with lower limb deformities, collected using this new PROM, could be used to inform parents and children about outcomes (physical, social, psychological) associated with specific treatment options. This information could supplement other objective outcome information (e.g., complication rates, how the leg will look, etc.) to help families to come to a more informed decision on a child’s course of treatment.

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Patient pre-treatment expectations and substance use treatment outcomes

Drug and Alcohol Dependence ◽

10.1016/j.drugalcdep.2015.07.541 ◽

2015 ◽

Vol 156 ◽

pp. e201

Author(s):

Kelly Serafini ◽

Suzanne Decker ◽

Brian D. Kiluk ◽

Luis Anez ◽

Manuel Paris ◽

...

Keyword(s):

Substance Use ◽

Treatment Outcomes ◽

Substance Use Treatment ◽

Treatment Expectations ◽

Pre Treatment

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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

BMC Cancer ◽

10.1186/s12885-020-07683-7 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

R. Gal ◽

D. Oostinga ◽

H. Wessels ◽

J. J. Verlaan ◽

R. Charest-Morin ◽

...

Keyword(s):

Systematic Review ◽

Cancer Patients ◽

Advanced Cancer ◽

Cancer Care ◽

Spinal Surgery ◽

Symptom Relief ◽

Spinal Metastases ◽

Advanced Cancer Patients ◽

Treatment Expectations ◽

Pre Treatment

Abstract Background Little is known about treatment 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 systematic review to summarize the literature on patient expectations regarding treatment outcomes of spinal surgery and advanced cancer care. Methods A comprehensive search was performed in MEDLINE, EMBASE and PsycINFO for studies between 2000 and sep-2019. Studies including adult patients (> 18 years), undergoing spinal surgery or receiving advanced cancer care, investigating patients’ pre-treatment expectations regarding treatment outcomes were included. Two independent reviewers screened titles, abstracts and full-texts, extracted data and assessed methodological quality. Results The search identified 7343 articles, of which 92 were selected for full-text review. For this review, 31 articles were included. Patients undergoing spinal surgery had overly optimistic expectations regarding pain and symptom relief, they underestimated the probability of functional disability, and overestimated the probability of (complete) recovery and return to work. Studies highlighted that patients feel not adequately prepared for surgery in terms of post-treatment expectations. Similarly, advanced cancer patients receiving palliative treatment often had overly optimistic expectations regarding their survival probability and cure rates. Conclusions Patients tend to have overly optimistic expectations regarding pain and symptom relief, recovery and prognosis following spinal surgery or advanced cancer care. Pretreatment consultation about the expected pain and symptom relief, recovery and prognosis may improve understanding of prognosis, and promote and manage expectations, which, in turn, may lead to better perceived outcomes. Trial registration PROSPERO registration number: CRD42020145151.

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Patient-reported outcome measures in the interaction between patient and clinician – a multi-perspective qualitative study

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-019-0170-x ◽

2020 ◽

Vol 4 (1) ◽

Cited By ~ 2

Author(s):

Caroline Trillingsgaard Mejdahl ◽

Liv Marit Valen Schougaard ◽

Niels Henrik Hjollund ◽

Erik Riiskjær ◽

Kirsten Lomborg

Keyword(s):

Qualitative Study ◽

Patient Involvement ◽

Methodological Approach ◽

Patient Activation ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Phone Call ◽

Structured Interviews ◽

Patient Reported

Abstract Background This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient’s PRO is termed a “PRO consultation.” In this multi-perspective qualitative study, we explored the influence of patients’ self-reported data on patient-clinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients. Results We found that application and deliberate use of patients’ PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients’ experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures’ potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement. Conclusions Applying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients’ introduction to PRO-based follow-up clarifies expectations.

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Patient, family member, and clinician perspectives on advance care planning (ACP) in hematology and hematopoietic stem cell transplantation (HSCT).

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.7 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 7-7

Author(s):

Reanne Booker ◽

Jessica Simon ◽

Shelley Raffin Bouchal ◽

Keyword(s):

Comparative Method ◽

Treatment Options ◽

Family Members ◽

Structured Interviews ◽

Related Factors ◽

Treatment Expectations ◽

Hematopoietic Stem ◽

Constant Comparative Method ◽

Clinician Perspectives ◽

Advance Care

7 Background: Studies have found that ACP engagement remains low in patients undergoing HSCT in spite of the high risks of treatment-related morbidity and mortality. Methods: This qualitative study used Thorne’s Interpretive Description methodology. Participants were accrued from hematological malignancy outpatient clinics at a tertiary oncology center and underwent audio-recorded semi-structured interviews. Analysis involved meticulous review of interview transcripts. The constant comparative method was utilized; data collection occurred concurrently with analysis until saturation of themes was achieved. Results: The study involved 6 patients, 5 family members and 8 clinicians (physicians, nurses, social worker). Participants thought that ACP was both acceptable and important yet many had not engaged in ACP. Perceived barriers to ACP included: system-related barriers such as lack of process for ACP, lack of time and/or resources; patient-related factors such as lack of understanding of disease, prognosis and/or expectations of HSCT, lack of patient/family understanding of ACP, a desire to ‘focus on positives’; and disease/treatment-related factors such as unpredictability of the disease and treatment trajectories in hematology and HSCT. Potential facilitators identified by participants included: integrating ACP as part of routine HSCT care, involving the multidisciplinary team in ACP, and introducing ACP early and revisiting frequently. Conclusions: This study revealed various barriers and facilitators related to participation in ACP. We are using the results of this study to inform and tailor interventions on ACP at our center. Introducing ACP as part of standard care in HSCT and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset, and when complications arise, may assist patients and families in recognizing how ACP fits into their care. Given the inherent unpredictability in this population, we suggest revisiting ACP frequently to optimize patient experience and ensure patients and family members are aware of other treatment options including supportive and palliative care.

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The neurologist’s role in disabling multiple sclerosis: A qualitative study of patient and care provider perspectives

Multiple Sclerosis Journal ◽

10.1177/1352458519845107 ◽

2019 ◽

Vol 26 (7) ◽

pp. 837-842

Author(s):

Jean-Pierre R Falet ◽

Shriya Deshmukh ◽

Abrar Al-Jassim ◽

Gregory Sigler ◽

Melanie Babinski ◽

...

Keyword(s):

Multiple Sclerosis ◽

Qualitative Study ◽

Thematic Analysis ◽

Care Provider ◽

Treatment Options ◽

Care Providers ◽

Structured Interviews ◽

Provider Perspectives ◽

Standard Medical Therapy ◽

Inductive Thematic Analysis

Background: Patients with advanced, disabling multiple sclerosis (MS) have few effective treatment options. Little is known about the role that patients and their care providers want their neurologist to fill in this situation. Objective: To better understand the role that patients with disabling MS and their care providers want their neurologist to have in their care. Methods: In this exploratory qualitative study, we conducted semi-structured interviews with 29 participants (19 patients with severe disability due to MS and 10 care providers). Interview transcripts were analyzed using inductive thematic analysis. Results: Participants identified three main roles for their neurologist: a source of hope for therapeutic advances, an educator about the disease and its management, and a source of support. Conclusion: Despite sustaining a level of disability that may be refractory to standard medical therapy, patients with disabling MS and care providers continue to value certain roles of their neurologist. The neurologist’s role as a source of hope and support in particular has not received enough attention in the literature.

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Content validity of Scoliosis Research Society questionnaire-22 revised (SRS-22r) for adolescents with idiopathic scoliosis: protocol for a qualitative study exploring patient’s and practitioner’s perspectives

BMJ Open ◽

10.1136/bmjopen-2021-053911 ◽

2021 ◽

Vol 11 (12) ◽

pp. e053911

Author(s):

Samia Alamrani ◽

Adrian Gardner ◽

Deborah Falla ◽

Emily Russell ◽

Alison B Rushton ◽

...

Keyword(s):

Qualitative Study ◽

Idiopathic Scoliosis ◽

Content Validity ◽

Group Discussion ◽

Research Society ◽

Research Experience ◽

Structured Interviews ◽

Convenience Sample ◽

Scoliosis Research Society ◽

Patient Reported

IntroductionContent validity is the most important measurement property for any patient-reported outcome measure (PROM). It being the extent that the PROM measures important concepts that are relevant to the population of interest. Adolescent with idiopathic scoliosis (AIS) is the most common spinal deformity in paediatric populations, with the Scoliosis Research Society questionnaire-22 revised (SRS-22r) a commonly used PROMof quality of life. In the absence of existing evidence, a content validity study for SRS-22r is needed to confirm its suitability for AIS. Thus, this study aims to investigate the content validity of SRS-22r for AIS. A secondary aim is to explore healthcare professional (HCP) perspectives of the barriers and facilitators to using outcome measures in AIS.Methods and analysisQualitative study reported according to COnsolidated criteria for Reporting Qualitative Studies. A purposive sample of AIS (n=10–15, Cobb angle >25°, aged 10–18 years) will be recruited for online semi-structured interviews. A convenience sample (n=10–12) of HCP with clinical and/or research experience in AIS will be recruited for a focus group discussion. Topic guides and age-relevant documents are informed by existing evidence and developed using a framework of concept elicitation and cognitive debriefing. Audio-recordings will be transcribed verbatim, coded, analysed and synthesised using interpretive phenomenology analysis. Themes that generated from the analysis will be used as codes that will then be mapped to the SRS-22r contents.Ethics and disseminationThe Health Research Authority and Health and Care Research Wales approval have been granted (IRAS 289888). Study findings will be disseminated through publications in peer-reviewed journals and conference presentations.

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