The patient journey following lumbar discectomy surgery: A qualitative study

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.

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PCN476 THE PATIENT JOURNEY WITH METASTATIC PROSTATE CANCER: A PILOT QUALITATIVE STUDY FROM GREECE

Value in Health ◽

10.1016/j.jval.2019.09.668 ◽

2019 ◽

Vol 22 ◽

pp. S529

Author(s):

E. Karampli ◽

V. Tsiantou ◽

A. Maina ◽

C. Magoulas ◽

V. Naoum ◽

...

Keyword(s):

Prostate Cancer ◽

Qualitative Study ◽

Metastatic Prostate Cancer ◽

Patient Journey

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‘You can’t start a car when there’s no petrol left’: a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation

BMJ Open ◽

10.1136/bmjopen-2020-048024 ◽

2021 ◽

Vol 11 (7) ◽

pp. e048024

Author(s):

Holly Standing ◽

Richard G Thomson ◽

Darren Flynn ◽

Julian Hughes ◽

Kerry Joyce ◽

...

Keyword(s):

Qualitative Study ◽

Implantable Cardioverter Defibrillator ◽

Advance Care Planning ◽

Trigger Points ◽

Current Status ◽

Comparative Approach ◽

Care Planning ◽

Patient Journey ◽

Cardioverter Defibrillator ◽

Advance Care

ObjectiveTo explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians.DesignA multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach.SettingOne tertiary and two district general hospitals in England.ParticipantsWe completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals.ResultsFour key themes were identified from the data: the current status of deactivation discussions; patients’ perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided.ConclusionsThere is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

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PCN294 - THE PATIENT JOURNEY OF MEN WITH LOCALISED PROSTATE CANCER: RESULTS FROM A QUALITATIVE STUDY IN GREECE

Value in Health ◽

10.1016/j.jval.2018.09.376 ◽

2018 ◽

Vol 21 ◽

pp. S64

Author(s):

V. Tsiantou ◽

E. Karampli ◽

C. Magoulas ◽

A. Maina ◽

...

Keyword(s):

Prostate Cancer ◽

Qualitative Study ◽

Patient Journey

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The early patient journey following lumbar spinal fusion surgery: a qualitative study using semi structured interviews and weekly patient diaries

Physiotherapy ◽

10.1016/j.physio.2020.03.083 ◽

2020 ◽

Vol 107 ◽

pp. e61-e62

Author(s):

A. Rushton ◽

A. Masson ◽

F. Jadhakhan ◽

J.B. Staal ◽

M. Verra ◽

...

Keyword(s):

Qualitative Study ◽

Spinal Fusion ◽

Lumbar Spinal Fusion ◽

Structured Interviews ◽

Patient Journey ◽

Fusion Surgery ◽

Spinal Fusion Surgery ◽

Lumbar Spinal

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Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2013-000482 ◽

2013 ◽

Vol 5 (4) ◽

pp. 366-372 ◽

Cited By ~ 10

Author(s):

A Richardson ◽

R Wagland ◽

R Foster ◽

J Symons ◽

C Davis ◽

...

Keyword(s):

Qualitative Study ◽

Cancer Of Unknown Primary ◽

Unknown Primary ◽

Patient Journey

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‘Patients come with two garbage bags full of problems and we have to sort them.’ A qualitative study of the experiences of healthcare professionals on patients admitted to short-term residential care in the Netherlands

Age and Ageing ◽

10.1093/ageing/afab011 ◽

2021 ◽

Author(s):

Judith H van den Besselaar ◽

Linda Hartel ◽

Joost D Wammes ◽

Janet L MacNeil-Vroomen ◽

Bianca M Buurman

Keyword(s):

Older Adults ◽

Qualitative Study ◽

The Netherlands ◽

Residential Care ◽

General Health ◽

Healthcare Professionals ◽

Health Problems ◽

Short Term ◽

Patient Journey ◽

Return Home

Abstract Background Short-term residential care (STRC) facilities were recently implemented in the Netherlands to provide temporary care to older adults with general health problems. The aim of STRC is to allow the individual to return home. However, 40% of patients are discharged to long-term care facilities. In-depth data about characteristics of patients admitted and challenges in providing STRC are missing. Objective To obtain perspectives of STRC professionals on the patient journey from admission to discharge. Design Qualitative study. Setting Eight nursing homes and three hospitals. Subjects A total of 28 healthcare professionals. Methods A total of 13 group interviews with in-depth reviews of 39 pseudonymised patient cases from admission to discharge. Interviews were analysed thematically. Results Many patients had complex problems that were underestimated at handover, making returning to home nearly impossible. The STRC eligibility criteria that patients have general health problems and can return home do not fit with current practice. This results in a mismatch between patient needs and the STRC that is provided. Therefore, planning care before and after discharge, such as advance care planning, social care and home adaptations, is important. Conclusions STRC is used by patients with complex health problems and pre-existing functional decline. Evidence-based guidelines, appropriate staffing and resources should be provided to STRC facilities. We need to consider the environmental context of the patient and healthcare system to enable older adults to live independently at home for longer.

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Barriers to high quality coding of hospital chart information to administrative data: A qualitative study

International Journal for Population Data Science ◽

10.23889/ijpds.v1i1.39 ◽

2017 ◽

Vol 1 (1) ◽

Cited By ~ 1

Author(s):

Karen Tang ◽

Kelsey Lucyk ◽

Hude Quan

Keyword(s):

Qualitative Study ◽

Electronic Medical Records ◽

Administrative Data ◽

Medical Records ◽

Health Service Delivery ◽

Structured Interview ◽

Recruitment Strategy ◽

Physician Education ◽

High Quality ◽

Patient Journey

ABSTRACTObjectives Administrative data are widely used in research, health policy, and the evaluation of health service delivery. We undertook a qualitative study to explore the barriers to high quality coding of chart information to administrative data, at the level of coders in Canada. ApproachOur study design is qualitative. We recruited professional medical chart coders and data users working across Alberta, Canada, using a multimodal recruitment strategy. We conducted an in-depth, semi-structured interview with each participant. All interviews were audio-recorded and transcribed. We conducted thematic analysis (e.g., line-by-line open coding) of interview transcripts. Codes were then collated into themes and compared across our dataset to ensure accurate interpretations of the data. The study team met to discuss, modify, and interpret emergent themes in the context of the barriers to coding administrative data. ResultsWe recruited 28 coding specialists. In general, coders had high job satisfaction and sense of collegiality, as well as sufficient resources to address their coding questions. They believed themselves to be adequately trained and consistently put in the extra effort when searching charts to find additional information that accurately reflected the patient journey. Barriers to high quality coding from the coder perspective included: 1) Incomplete and inaccurate information in physician progress notes and discharge summaries; 2) Difficulty navigating a complex hybrid of paper and electronic medical records; 3) Focus on productivity rather than quality by the employer, which at times resulted in inconsistent instructions for coding secondary diagnoses and discordant expectations between the employer and the coders’ professional standards. ConclusionFuture interventions to improve the quality of administrative data should focus on physician education of necessary components in charting, evaluation of electronic medical records from the perspectives of those who play a key role in abstracting data, and evaluation of productivity guidelines for coders and their effects on data quality.

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Patient journey following lumbar discectomy surgery: protocol for a single-centre qualitative analysis of the patient rehabilitation experience (DiscJourn)

BMJ Open ◽

10.1136/bmjopen-2018-025814 ◽

2019 ◽

Vol 9 (8) ◽

pp. e025814

Author(s):

Louise White ◽

Nicola R Heneghan ◽

Navin Furtado ◽

Annabel Masson ◽

Alison B Rushton

Keyword(s):

Current Knowledge ◽

Postoperative Management ◽

Practice Variation ◽

Lumbar Discectomy ◽

Patient Specific ◽

Research Approach ◽

Structured Interviews ◽

Topic Guide ◽

Patient Journey ◽

The Impact

IntroductionLumbar discectomy is a widely used surgical procedure internationally with the majority of patients experiencing significant benefit. However, approximately 20% of patients report suboptimal functional recovery and quality of life. The impact and meaning of the surgical experience from the patients’ perspective are not fully understood. Furthermore, there is limited evidence guiding postoperative management with significant clinical practice variation and it is unclear if current postoperative support is valued, beneficial or meets patients’ needs and expectations. This study aims to address the evidence gap by moving beyond current knowledge to gain insight into the lived experiences relating to patients’ lumbar discectomy surgery journey. Results will inform more meaningful and specific care, thus, enhance rehabilitation and outcomes.Methods and analysisA qualitative investigation using interpretative phenomenology analysis (IPA) will provide a flexible inductive research approach. A purposive sample (n=20) of patients undergoing primary discectomy will be recruited from one UK NHS secondary care centre. Semi-structured interviews will be conducted postsurgery discharge. A topic guide, developed from the literature and our previous work with input from two patient co-investigators, will guide interviews with the flexibility to explore interesting or patient-specific points raised. Providing longitudinal data, patients will keep weekly diaries capturing experiences and change over time throughout 12 months following surgery. A second interview will be completed 1 year postsurgery with its topic guide informed by initial findings. This combination of patient interviews and diaries will capture patients’ attitudes and beliefs regarding surgery and recovery, facilitators and barriers to progress, experiences regarding return to activities/function and interactions with healthcare professionals. The rich density of data will be thematically analysed in accordance with IPA, supported by NVivo software.Ethics and disseminationEthical approval has been granted by the London-Bloomsbury Research Ethics Committee (18/LO/0459; IRAS 241345). Conclusions will be disseminated through conferences and peer-reviewed journals.

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Going home after infant cardiac surgery: a UK qualitative study

Archives of Disease in Childhood ◽

10.1136/archdischild-2015-308827 ◽

2016 ◽

Vol 101 (4) ◽

pp. 320-325 ◽

Cited By ~ 25

Author(s):

Jenifer Tregay ◽

Jo Wray ◽

Sonya Crowe ◽

Rachel Knowles ◽

Piers Daubeney ◽

...

Keyword(s):

Qualitative Study ◽

Home Monitoring ◽

First Year ◽

Framework Analysis ◽

Patient Journey ◽

Cardiac Intervention ◽

Tertiary Centre ◽

The Uk ◽

Effective Transfer ◽

First Year Of Life

ObjectiveTo qualitatively assess the discharge processes and postdischarge care in the community for infants discharged after congenital heart interventions in the first year of life.DesignQualitative study using semistructured interviews and Framework Analysis.SettingUK specialist cardiac centres and the services their patients are discharged to.SubjectsTwenty-five cardiologists and nurses from tertiary centres, 11 primary and secondary health professionals and 20 parents of children who had either died after discharge or had needed emergency readmission.ResultsParticipants indicated that going home with an infant after cardiac intervention represents a major challenge for parents and professionals. Although there were reported examples of good care, difficulties are exacerbated by inconsistent pathways and potential loss of information between the multiple teams involved. Written documentation from tertiary centres frequently lacks crucial contact information and contains too many specialist terms. Non-tertiary professionals and parents may not hold the information required to respond appropriately when an infant deteriorates, this contributing to the stressful experience of managing these infants at home. Where they exist, the content of formal ‘home monitoring pathways’ varies nationally, and families can find this onerous.ConclusionsService improvements are needed for infants going home after cardiac intervention in the UK, focusing especially on enhancing mechanisms for effective transfer of information outside the tertiary centre and processes to assist with monitoring and triage of vulnerable infants in the community by primary and secondary care professionals. At present there is no routine audit for this stage of the patient journey.

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