scholarly journals P.030 The journey with CIDP- a Canadian perspective

2019 ◽  
Vol 46 (s1) ◽  
pp. S21-S22
Author(s):  
D Hartlen ◽  
T Mikhail
Keyword(s):  
Peripheral Nerves ◽  
Unmet Needs ◽  
Chronic Inflammatory Demyelinating Polyradiculoneuropathy ◽  
Patient Records ◽  
Emotional States ◽  
Structured Interviews ◽  
Patient Journey ◽  
Patient’S Experience ◽  
Yearly Incidence ◽  
Canadian Perspective

Background: Chronic Inflammatory demyelinating polyradiculoneuropathy is a rare disorder of the peripheral nerves. A disease affecting up to 8.9 out of 100,000 people, and a yearly incidence of 1.6/100,000 people, CIDP is a condition that is treatable but still relatively unknown outside of the neuromuscular community. The purpose of this research, initiated by the GBS/CIDP Foundation, is to better understand a patient’s journey living with the disease and identify unmet needs. Methods: The research consists of a mix of structured interviews, digital ethnography and patient records. A total of 10 Canadian patients living with CIDP and their caregivers, 7 Canadian neurologists and 3 Canadian neuroscience nurses will be the subjects for our research. Results: In order to identify key interactions between patients and the healthcare system, the report will map a patient’s experience on 4 distinct planes. Clinical journey (ex: first symptoms, diagnosis, disease progression), Patient emotional journey (the emotional states the patient undergoes throughout his/her journey), Caregiver emotional journey, and Outcomes (ex: delays in care, damaged relationships, commitment to therapy). The report will identify key areas along the patient journey where more intervention is possible and where more research may be needed. Conclusions: The research is expected to be completed by April 2019.

scholarly journals Coassessment framework to identify person-centred unmet needs in stroke rehabilitation: a case report in Norway

2020 ◽  
Vol 7 (1) ◽  
pp. 148-156
Author(s):  
Kari Jorunn Kværner ◽  
Linn Nathalie Støme ◽  
Jonathan Romm ◽  
Karianne Rygh ◽  
Frida Almquist ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Stroke Rehabilitation ◽  
Unmet Needs ◽  
Health Workers ◽  
University Hospital ◽  
Health Staff ◽  
Hospital Workers ◽  
Next Of Kin ◽  
Patient Journey ◽  
Health Value

ObjectiveTo describe unmet needs and values in stroke rehabilitation using the Health Value Framework and the associated coassessment tool Health Value Spider, a framework designed to identify and prioritise unmet needs based on health technology assessment (HTA).SettingThe study took place at Oslo University Hospital, Norway, from February to April 2019. Participants in three consecutive workshops were recruited from Sunnaas Rehabilitation Hospital, Oslo Municipality, Hospital Procurement Trust and Oslo University Hospital. Twenty-four hospital workers (medical and allied health staff and administrative staff) participated in workshop 1 and 29 patients, user representatives and hospital workers in workshop 2. Twenty-one patients and hospital workers participated in workshop 3.InterventionsStakeholder analysis and scenario building was performed in a coassessment setting where unmet needs were identified applying the Health Value Framework. Two of the authors are also the developers of the Health Value Framework (KJK and LNS).ResultsIn the two first workshops where health workers, patients and next of kin perspectives were elicited, three needs were identified: patient insecurity in patient journey transitions, lack of stroke rehabilitation expertise in primary care and invisible patient problems, such as fatigue and cognitive impairment. In workshop 3, 12 opportunity areas were identified. Four opportunity areas were selected by the stakeholders based on a prioritisation process: early discovery of cognitive impairment, rehabilitation continuity, empowered patients and next of kin and remote monitoring and digital touchpoints.ConclusionHealth Value Spider successfully identified and prioritised unmet needs and described associated values.

scholarly journals Gender differences in patient journey to diagnosis and disease outcomes: results from the European Map of Axial Spondyloarthritis (EMAS)

2021 ◽  
Author(s):  
Marco Garrido-Cumbrera ◽  
◽  
Denis Poddubnyy ◽  
Laure Gossec ◽  
Raj Mahapatra ◽  
...  
Keyword(s):  
Gender Differences ◽  
Psychological Distress ◽  
Disease Activity ◽  
Healthcare Professionals ◽  
Unmet Needs ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
Hla B27 ◽  
Patient Journey ◽  
Disease Characteristics

Abstract Introduction/objectives To evaluate the journey to diagnosis, disease characteristics and burden of disease in male and female patients with axial spondyloarthritis (axSpA) across Europe. Method Data from 2846 unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017–2018) across 13 countries were analysed. Sociodemographic characteristics, lifestyle, diagnosis, disease characteristics and patient-reported outcomes (PROs) [disease activity –BASDAI (0–10), spinal stiffness (3–12), functional limitations (0–54) and psychological distress (GHQ-12)] were compared between males and females using chi-square (for categorical variables) and student t (for continuous variables) tests. Results In total, 1100 (38.7%) males and 1746 (61.3%) females participated in the EMAS. Compared with males, females reported considerable longer diagnostic delay (6.1 ± 7.4 vs 8.2 ± 8.9 years; p < 0.001), higher number of visits to physiotherapists (34.5% vs 49.5%; p < 0.001) and to osteopaths (13.3% vs 24.4%; p < 0.001) before being diagnosed and lower frequency of HLA-B27 carriership (80.2% vs 66.7%; p < 0.001). In addition, females reported higher degree of disease activity in all BASDAI aspects and greater psychological distress through GHQ-12 (4.4 ± 4.2 vs 5.3 ± 4.1; p < 0.001), as well as a greater use of alternative therapies. Conclusion The patient journey to diagnosis of axSpA is much longer and arduous in females, which may be related to physician bias and lower frequency of HLA-B27 carriership. Regarding PROs, females experience higher disease activity and poorer psychological health compared with males. These results reflect specific unmet needs in females with axSpA needing particular attention. Key Points• Healthcare professionals’ perception of axSpA as a predominantly male disease may introduce some bias during the diagnosis and management of the disease. However, evidence about male-female differences in axSpA is scarce.• EMAS results highlight how female axSpA patients report longer diagnostic delay and higher burden of the disease in a large sample of 2846 participants of 13 European countries.• Results reflect unmet needs of European female patients. Healthcare professionals should pay close attention in order to accurately diagnose and efficiently manage axSpA cases while further research should be developed on the cause of reported gender differences.

scholarly journals Patient’s experience of psoriatic arthritis: a conceptual model based on qualitative interviews

RMD Open ◽  
2020 ◽  
Vol 6 (3) ◽  
pp. e001321
Author(s):  
Alexis Ogdie ◽  
Kaleb Michaud ◽  
Miroslawa Nowak ◽  
Rachel Bruce ◽  
Sarah Cantor ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Conceptual Model ◽  
Patient Experience ◽  
Qualitative Interviews ◽  
Signs And Symptoms ◽  
Structured Interviews ◽  
Skin Symptoms ◽  
Patient’S Experience ◽  
Significant Burden

IntroductionPsoriatic arthritis (PsA) is a heterogeneous chronic inflammatory musculoskeletal disorder that manifests as peripheral arthritis, dactylitis, enthesitis and spondylitis. PsA results in significant burden that impacts quality of life of patients. We examined the signs, symptoms and impacts reported by patients with PsA, to characterise the patient experience of PsA and develop a conceptual model representing this patient experience.MethodsSemi-structured interviews were conducted with patients with PsA recruited through the FORWARD databank. Spontaneous and probed signs, symptoms and impacts of PsA were assessed. Patients rated the disturbance of these concepts on their lives using a scale from 0 (‘does not disturb’) to 10 (‘greatly disturbs’). Signs, symptoms and impacts reported by >80% of patients with a disturbance rating of ≥5 were defined as salient concepts. Recruitment continued until concept saturation was achieved.Results19 patients with PsA were interviewed. The interviews elicited 42 symptoms of which 8 had not been identified in a previous literature review encompassing 15 relevant articles. The most salient signs and symptoms elicited in the interviews were joint pain, skin symptoms, stiffness, swollen/inflamed joints and fatigue all with moderate to high disturbance ratings (range: 5.5–7.8). The most salient impacts were sleep disturbance, physical disability, effects on daily activities and feelings of frustration with also moderate to high disturbance ratings (range: 6.1–7.4).ConclusionsThe interviews highlighted the adverse impact PsA has on the patient’s life and may inform on outcome variables or areas suitable to be assessed in PsA studies.

scholarly journals Patient factors driving overuse of cardiac catheterisation: a qualitative study with 25 participants from two German teaching practices

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e024600 ◽  
Author(s):  
Anna Herwig ◽  
Dorothea Dehnen ◽  
Birgitta Weltermann
Keyword(s):  
Teaching Practices ◽  
Qualitative Content Analysis ◽  
Stable Coronary Artery Disease ◽  
Cardiac Catheterisation ◽  
Structured Interviews ◽  
Patient Factors ◽  
Qualitative Interview Study ◽  
Patient’S Experience ◽  
Artery Disease ◽  
Physician Adherence

ObjectivesPercutaneous coronary interventions do not provide a benefit over medical therapy for stable patients. However, an overuse of cardiac catheterisation (CC) for stable coronary artery disease (CAD) is documented in Germany and other countries. In this study, we aim to understand patient factors that foster this overuse.DesignOur study is an exploratory qualitative interview study with narrative, structured interviews. The interviews were analysed using qualitative content analysis by Mayring.SettingThe interviews were conducted in two German teaching practices.Participants24 interviews with 25 patients were conducted; 17 (68%) patients were male, the average age was 73.9 years (range 53–88 years). All patients suffered from CAD and had undergone at least one CC. Patients with known anxiety disorders were excluded from the study.ResultsThe analysis identified six patient factors which contributed to or prevented the overuse of CC: (1) unquestioned acceptance of prescheduled appointments for procedures/convenience; (2) disinterest in and/or lack of disease-specific knowledge; (3) helplessness in situations with varying opinions on the required care; (4) fear of another cardiac event, (5) patient–physician relationship and (6) the patient’s experience that repeat interventions did not result in a change of health status or care.ConclusionsConducted in a country with documented overuse of CC, we showed that most patients trusted their physicians’ recommendations for repeat coronary angiographies even if they were asymptomatic. Strategies to align physician adherence with guidelines and corresponding patient information are needed to prevent overuse.

scholarly journals Chronic Inflammatory Demyelinating Polyradiculoneuropathy 101—Pitfalls and Pearls of Diagnosis and Treatment

US Neurology ◽  
2017 ◽  
Vol 13 (01) ◽  
pp. 18 ◽  
Author(s):  
Said R Beydoun ◽  
Thomas H Brannagan III ◽  
Peter Donofrio ◽  
Carol Lee Koski ◽  
Eric Lancaster ◽  
...  
Keyword(s):  
Peripheral Nerves ◽  
Ivig Therapy ◽  
Chronic Inflammatory Demyelinating Polyradiculoneuropathy ◽  
Sensory Function ◽  
Therapeutic Interventions ◽  
First Line ◽  
Chronic Disability ◽  
Treatable Condition ◽  
Progressive Weakness

Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), which is caused by demyelination of the peripheral nerves, is characterized by progressive weakness and impaired sensory function in the arms and legs. CIDP is a treatable condition in which early diagnosis is crucial to limit chronic disability. CIDP can mimic other neuropathies and it is important to identify these in order to ensure prompt treatment. Patients with other causes of neuropathy should be suspected of having CIDP if there is rapid progress or proximal weakness. Intravenous immunoglobulin (IVIG), corticosteroids, and plasma exchange are first-line therapies. The IVIG CIDP Efficacy (ICE) trial, the largest trial reported of any CIDP treatment, demonstrated that IVIG therapy reduced disability and functional impairment, as well as improved quality of life. Autoantibodies against membrane proteins of the peripheral nerve axons or the myelin sheath have been reported recently, and an improved understanding of antibody responses in CIDP may enable the development of future targeted therapeutic interventions.

scholarly journals The Breast Service Psychosocial Model of Care Project

2009 ◽  
Vol 33 (4) ◽  
pp. 560
Author(s):  
Bruce G Mann ◽  
Lauren K Williams
Keyword(s):  
Psychosocial Care ◽  
Breast Disease ◽  
Model Of Care ◽  
Structured Interviews ◽  
Patient Journey ◽  
Psychosocial Services ◽  
Psychosocial Concerns ◽  
Psychosocial Model ◽  
Patient Responses ◽  
Inductive Analysis

Objective: It has been consistently demonstrated that many women with breast disease will experience psychosocial distress at some stage along the patient journey. Psychosocial care has recently gained more prominence and is increasingly recognised as an important aspect of care offered to patients with breast cancer. The purpose of this project was to develop a model that improved the way psychosocial services were provided to patients. The aim of this paper is to describe the process in developing this psychosocial model of care for patients with breast disease. Methods: Using in-depth semi-structured interviews with a sample of patients and staff, we examined psychosocial concerns experienced by breast patients and the factors associated with the effective assessment and delivery of psychosocial care. The project was approved by the Royal Women?s hospital ethics secretariat as a quality assurance project. Results: An inductive analysis of staff responses indicated that a standardised screening and referral pathway was needed in a context of well defined staff roles and a multidisciplinary team environment. An inductive analysis of patient responses indicated that psychosocial concerns were common, but varied, and a tailored approach to the provision of psychosocial care was warranted. Discussion: In line with these findings, a standardised assessment and referral pathway was developed for The Breast Service that may be extended for use in other clinical settings and tumour streams.

scholarly journals Diagnostic challenges in chronic inflammatory demyelinating polyradiculoneuropathy

Brain ◽  
2020 ◽  
Vol 143 (11) ◽  
pp. 3214-3224
Author(s):  
Filip Eftimov ◽  
Ilse M Lucke ◽  
Luis A Querol ◽  
Yusuf A Rajabally ◽  
Camiel Verhamme
Keyword(s):  
Peripheral Nerves ◽  
Diagnostic Tests ◽  
High Sensitivity ◽  
Nerve Biopsy ◽  
Chronic Inflammatory Demyelinating Polyradiculoneuropathy ◽  
Control Group ◽  
Nerve Ultrasound ◽  
Hand Performance ◽  
The One ◽  
Csf Examination

Abstract Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) consists of a spectrum of autoimmune diseases of the peripheral nerves, causing weakness and sensory symptoms. Diagnosis often is challenging, because of the heterogeneous presentation and both mis- and underdiagnosis are common. Nerve conduction study (NCS) abnormalities suggestive of demyelination are mandatory to fulfil the diagnostic criteria. On the one hand, performance and interpretation of NCS can be difficult and none of these demyelinating findings are specific for CIDP. On the other hand, not all patients will be detected despite the relatively high sensitivity of NCS abnormalities. The electrodiagnostic criteria can be supplemented with additional diagnostic tests such as CSF examination, MRI, nerve biopsy, and somatosensory evoked potentials. However, the evidence for each of these additional diagnostic tests is limited. Studies are often small without the use of a clinically relevant control group. None of the findings are specific for CIDP, meaning that the results of the diagnostic tests should be carefully interpreted. In this update we will discuss the pitfalls in diagnosing CIDP and the value of newly introduced diagnostic tests such as nerve ultrasound and testing for autoantibodies, which are not yet part of the guidelines.

Patients' Views of Therapeutic Action in Psychoanalytic Group Psychotherapy

2009 ◽  
Vol 42 (2) ◽  
pp. 120-142 ◽  
Author(s):  
Lena Johansson ◽  
Andrzej Werbart
Keyword(s):  
Group Psychotherapy ◽  
Focal Point ◽  
Real Life ◽  
Theoretical Models ◽  
Therapeutic Action ◽  
Structured Interviews ◽  
Negative Experiences ◽  
Therapy Termination ◽  
Patient’S Experience ◽  
Group Members

Patients' views of curative and hindering factors in psychoanalytic group psychotherapy are explored, starting with semi-structured interviews with 28 young adult patients at therapy termination. Using grounded theory methodology, a theoretical model of therapeutic action is constructed, elucidating the interactions between positive and negative experiences in the group. The focal point appears to be the patient's experience of their own activity within the context of the group as whole, leading to increased self-knowledge and improved handling of emotions. The positively experienced change is also affected by people outside of therapy and real life events. The patients ascribed most frequent hindering factors to the absence of their own action to other group members and to the therapeutic frames. In contrast to therapist-based theoretical models, positive experience in the group leads patients to minimize the therapist's role, while negative experiences lead patients to want a more active therapist.

scholarly journals Creating person-al space for unspoken voices during diagnostic medical imaging examinations: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Chandra Rekha Makanjee ◽  
Anne-Marie Bergh ◽  
Deon Xu ◽  
Drishti Sarswat
Keyword(s):  
Medical Imaging ◽  
Medical Practitioner ◽  
Well Being ◽  
Structured Interviews ◽  
Patient Journey ◽  
Personal Lives ◽  
Healthcare Transition ◽  
Imaging Department ◽  
Patient Cooperation

Abstract Background There is emerging interest in person-centred care within a short-lived yet complex medical imaging encounter. This study explored this event from the viewpoint of patients referred for an imaging examination, with a focus on the person and their person-al space. Methods We used convenience sampling to conduct semi-structured interviews with 21 patients in a private medical imaging practice in Australia. The first phase of data analysis was conducted deductively, using the six elements of the person-centred, patient-journey framework of the Australian Commission on Safety and Quality in Healthcare: transition in; engagement; decisions; well-being; experience; and transition out. This was followed by inductive content analysis to identify overarching themes that span a patient’s journey into, through and out of an imaging encounter. Results The transition-in phase began with an appointment and the first point of contact with the imaging department at reception. Engagement focused on patient-radiographer interactions and explanations to the patient on what was going to happen. Decisions related primarily to radiographers’ decisions on how to conduct a particular examination and how to get patient cooperation. Participants’ well-being related to their appreciation of gentle treatment; they also referred to past negative experiences that had made a lasting impression. Transitioning out of the imaging encounter included the sending of the results to the referring medical practitioner. Person-al vulnerabilities emerged as a cross-cutting theme. Patients’ vulnerability, for which they needed reassurance, pertained to uncertainties about the investigation and the possible results. Healthcare professionals were vulnerable because of patient expectations of a certain demeanour and of pressure to perform optimal quality investigations. Lastly, patients’ personal lives, concerns and pressures – their person-al ‘baggage’ – shaped their experience of the imaging encounter. Conclusion To add value to the quality of the service they deliver, radiography practitioners should endeavour to create a person-al space for clients. Creating these spaces is complex as patients are not in a position to judge the procedures required by technical imaging protocols and the quality control of equipment. A reflective tool is proposed for radiographers to use in discussions with their team and its leaders on improving person-centred care and the quality of services in their practice.

scholarly journals Student Emotions Due to Parental Divorce/ Emosi Pelajar Akibat Perceraian Ibubapa

2019 ◽  
Vol 12 (1) ◽  
Author(s):  
Siti Nor Syafiqah Mohammad ◽  
Mohd Nasir Masroom
Keyword(s):  
Qualitative Study ◽  
Narrative Analysis ◽  
Positive Emotions ◽  
Psychological Development ◽  
Academic Excellence ◽  
Emotional States ◽  
Structured Interviews ◽  
Academic Difficulties ◽  
High Achieving Students ◽  
High Achieving

Divorce not only affects the husband and wife, but can also interfere with the psychological development of the child and to some extent disrupting their academic performance. Despite this, not all children whose parents are divorced face academic difficulties. This study aims to explore the emotional states of high-achieving students whose parents are divorced, and how they dealt with these emotions. This qualitative study utilised semi-structured interviews conducted to five randomly selected respondents who were high-achieving students whose parents were divorced. Data were analysed using the narrative analysis approach. The results showed that majority of the respondents experience negative emotions such as sadness, anger, depressed and sense of loss. Nonetheless, they also experience positive emotions namely surrender, acceptance and gratitude. They are able to manage their emotions because of their strengths and the accessibility of support from parents and others. In conclusion, high-achieving students with divorced parents are capable of managing their emotions and achieve academic excellence with the support of parents and other people around them.

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