scholarly journals Unmet Medical Needs in the Management of Ulcerative Colitis: Results of an Italian Delphi Consensus

2019 ◽  
Vol 2019 ◽  
pp. 1-9 ◽  
Author(s):  
Marco Daperno ◽  
Alessandro Armuzzi ◽  
Silvio Danese ◽  
Walter Fries ◽  
Giuseppina Liguori ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Unmet Needs ◽  
Clinical Symptoms ◽  
Negative Impact ◽  
Delphi Process ◽  
Delphi Consensus ◽  
Medical Needs

Background. The lifelong and remitting nature of ulcerative colitis results in considerable disability and a substantial negative impact on quality of life. The major goal of the therapy of ulcerative colitis is considered to be the modification of the course of the disease, so that the patient’s quality of life can be improved while minimising disease-related disability. Although considerable progress in understanding the molecular pathways involved in ulcerative colitis has led to improved treatment options, there is currently no definitive cure for ulcerative colitis, there remain considerable unmet needs in terms of long-term efficacy and safety, and there are many patients who continue to be burdened by physical and psychological symptoms. Defining unmet needs can help to increase the awareness of the shortcomings of current therapeutic management and highlight the need to achieve not only a control of clinical symptoms but also control of mucosal healing, in order to attain the best possible long-term outcomes. Methods. With the aim of providing a better understanding of the unmet needs of patients towards improving overall care, a Delphi process was used to obtain consensus among a group of Italian ulcerative colitis experts. The consensus group met with a major focus of delineating the unmet needs of current treatment strategies and overall management of ulcerative colitis, while also focusing on quality of life and patient care. Results. Three main areas were identified: (i) treatment, (ii) monitoring and risk management, and (iii) patient-related issues. A high level of consensus was reached on all but one of the statements identified. Conclusions. The findings arising from the Delphi process provide valuable insights into the unmet needs in the management of moderate-to-severe ulcerative colitis from the clinician’s perspective, while emphasising the benefits of therapeutic individualization and suggesting areas that need additional study with the aim of optimising the treatment of patients with ulcerative colitis.

scholarly journals Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.

Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

2016 ◽  
Vol 25 (8) ◽  
pp. 2053-2062 ◽  
Author(s):  
N. E. Andrew ◽  
M. F. Kilkenny ◽  
N. A. Lannin ◽  
D. A. Cadilhac
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Living with an MPN in Ireland: patients' and caregivers' perspectives

2021 ◽  
Vol 30 (17) ◽  
pp. S24-S30
Author(s):  
Geraldine Walpole ◽  
Mary Kelly ◽  
Joy Lewis ◽  
Avril Gleeson ◽  
Ann-Marie Cullen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Negative Impact ◽  
Peer Group ◽  
Myeloproliferative Neoplasms ◽  
Symptom Burden ◽  
Emotional Wellbeing ◽  
The Republic ◽  
The Impact

Myeloproliferative neoplasms (MPNs) are associated with a high disease burden, reduced quality of life and shortened survival. The aim of this questionnaire was to gain patients' and caregivers' perspectives on the impact of living with an MPN in the Republic of Ireland. An Irish adaptation of the ‘Global MPN Landmark survey’ was conducted. Fifty-one patients and 44 caregivers completed the questionnaire. Patients reported a wide variety of symptoms at the time of questionnaire completion; fatigue, bone pain and pruritus being most frequently reported. Approximately one-third of respondents from each of the groups (patients and caregivers) reported a negative impact of MPNs on their emotional wellbeing and daily lives. The study findings revealed that, despite treatment, symptom burden remains high, and several unmet needs exist, including educational, emotional and peer group support. Interventions that focus on reducing symptom burden and addressing these unmet needs, may improve the quality of life for patients with MPNs and their caregivers.

scholarly journals Psychosocial Aspects and Quality of Life in Cancer Patients undergoing Surgery

2021 ◽  
Vol 12 (4) ◽  
pp. 78-84
Author(s):  
M. Bakos ◽  
T. Jankovic ◽  
M. Vidiscak ◽  
S. Durdik
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Negative Impact ◽  
European Organization ◽  
Term Survival ◽  
Physical Relationship ◽  
End Of Treatment ◽  
Eortc Qlq

Introduction:Quality of life in cancer patients and probably also long term survival is negatively affected with fear of the recurrence of cancer and consequences of aggressive therapy. This is the reason for anxiety, depressions, and frustration which are accompanied by cognitive, emotional and behavioral disorders in their physical, relationship, sexual and social func- tioning. The aim of our study is to analyze the dynamics of evolution of the psychosocial loads and qualitative changes its symptomatology in cancer patients who survival 1-4 years after surgery. Material and methods:For assessment of psychosocial mor- bidity ́s in measure in surgery patients standardized question- naires of European Organization for Research and Treatment of Cancer- questionnaire EORTC QLQ-C30.3 (Quality of Life- C.30.3) and its module EORTC QLQ- BR23 were used. Results:The degree of psychosocial mortality in survival pa- tients one year after MRM in our group clearly demonstrated that these patients suffered because of consequences of psy- chosocial loads. It results from fear of recurrence of cancer and next functional, emotional, cognitive and social disorders with- out regard for surgery range. The degree of psychosocial loads in patients after MRM is still more than 4 years after end of treatment. Results show, that after the end of treatment there are many changes in their lives - anxiety and depressions can lead to psychical lability because of higher doubts, nervous- ness, irritability, helplessness and loneliness in their sufferers. Conclusion:Out-patient psychosocial interventions and pre- ventions because of negative impact of ongoing and changing psychosocial loads becomes necessary. It means that there is negative impact on quality of life; of long term cancer remis- sion and survival of patients after surgery.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

scholarly journals Symptoms compatible with functional bowel disorders are common in patients with quiescent ulcerative colitis and influence the quality of life but not the course of the disease

2019 ◽  
Vol 12 ◽  
pp. 175628481982768 ◽  
Author(s):  
Georgios Mavroudis ◽  
Magnus Simren ◽  
Börje Jonefjäll ◽  
Lena Öhman ◽  
Hans Strid
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Psychological Symptoms ◽  
Negative Impact ◽  
Gastrointestinal Symptoms ◽  
Functional Bowel Disorders ◽  
Mayo Score ◽  
Bowel Disorders ◽  
Total Burden

Background: Whether patients with inactive ulcerative colitis (UC) have symptoms compatible with functional bowel disorders (FBDs) other than irritable bowel syndrome (IBS) is unclear. Our aim was to investigate the prevalence and burden of these symptoms and determine impact on the UC course. Methods: We used Mayo score, sigmoidoscopy and calprotectin (f-cal) to define remission in 293 UC patients. Presence of symptoms compatible with FBD, severity of gastrointestinal, extraintestinal and psychological symptoms, stress levels and quality of life (QoL) were measured with validated questionnaires. At 1 year later, remission was determined by modified Mayo score and f-cal in 171 of these patients. They completed the same questionnaires again. Results: A total of 18% of remission patients had symptoms compatible with FBD other than IBS, and 45% subthreshold symptoms compatible with FBD. The total burden of gastrointestinal symptoms in patients with symptoms compatible with FBD was higher than in patients without FBD ( p < 0.001), which had negative impact on QoL ( p = 0.02). These symptoms were not correlated with psychological distress, systemic immune activity or subclinical colonic inflammation and were not a risk factor for UC relapse during follow up. Conclusion: Symptoms compatible with FBD other than IBS are common during UC remission influencing patients’ QoL but not the UC course.

Transanal Ileal Pouch-Anal Anastomosis for Ulcerative Colitis has Comparable Long-Term Functional Outcomes to Transabdominal Approach: A Multicentre Comparative Study

2019 ◽  
Vol 14 (6) ◽  
pp. 726-733 ◽  
Author(s):  
Pramodh Chandrasinghe ◽  
Michele Carvello ◽  
Karin Wasmann ◽  
Caterina Foppa ◽  
Pieter Tanis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Functional Outcomes ◽  
Ileal Pouch ◽  
Cohort Analysis ◽  
Ileal Pouch Anal Anastomosis ◽  
Global Quality Of Life ◽  
Anal Anastomosis

Abstract Background The transanal approach to ileal pouch-anal anastomosis [Ta-IPAA] provides better access to the lower pelvis with lower short-term morbidity in ulcerative colitis [UC]. The aim of this study was to assess the long-term functional outcomes after Ta-IPAA vs transabdominal IPAA [Abd-IPAA] in UC. Methods A multicentre cohort analysis was performed between March 2002 and September 2017. Patient characteristics, surgical details and postoperative outcomes were compared. CGQL [Cleveland global quality of life] score at 12 months with a functioning pouch was considered the primary end point. Results A total of 374 patients [100 Ta-IPAA vs 274 Abd-IPAA] were included. Ta-IPAA demonstrated a comparable overall quality of life [CGQL score] to Abd-IPAA [0.75 ± 0.11 vs 0.71 ± 0.14; respectively, p = 0.1]. Quality of life [7.71 ± 1.17 vs 7.30 ± 1.46; p = 0.04] and energy-level items [7.16 ± 1.52 vs 6.66 ± 1.68; p = 0.03] were significantly better after Ta-IPAA, while the quality of health item was comparable [7.68 ± 1.26 vs 7.64 ± 1.44; p = 0.96]. Analysis excluding anastomotic leaks did not change the overall CGQL scores. Stool frequencies [&gt;10/24 h: 22% vs 21%; p = 1.0] and the rate of a single episode of major incontinence during the following 12-month period [27% vs 26%; p = 0.89] were similar. The differences in 30-day morbidity rates [33% vs 41%; p = 0.2] and anastomotic leak rates were not significant [6% vs 13%; p = 0.09]. Conclusions This study provides evidence of comparable long-term functional outcome and quality of life after Ta-IPAA and Abd-IPAA for UC.

Structure of a physician assistant (PA)-managed survivorship practice within a multidisciplinary breast clinic

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6087-6087
Author(s):  
B. A. Moore ◽  
D. W. Northfelt
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Well Being ◽  
Standards Of Care ◽  
Team Approach ◽  
Breast Clinic ◽  
Early Detection Of Disease ◽  
Medical Needs

6087 Background: In the last two decades, success in breast cancer screening and treatment has resulted in evolution of a growing patient population with unique medical needs. The American Cancer Society currently estimates a 98% relative five-year survival rate for patients with localized breast cancer, 88% for all stages combined. Caring for survivors represents both opportunity and challenge for the medical community. The integrated team approach in a multidisciplinary breast center is the ideal model to incorporate PAs in providing comprehensive long-term surveillance and support in this setting. Methods: The core mission of a PA-managed survivorship practice is outlined as follows: Maximize health and quality of life in breast cancer survivors, recognizing physical, psychological and spiritual factors; Provide early detection of disease recurrence and/or new breast cancer occurrence in women with a breast cancer history; Aggressively manage and overcome problems resulting from breast cancer treatment; Aid women in understanding and overcoming risks, including genetic risks, for developing breast cancer. Evidenced-based algorithms defining standards of care create the foundation for clinical decision making and establish precedent for continuity of care. The scope of care is enhanced by opportunities to incorporate research and genetic counseling. Results: Of 205 patients seen between 9/1 and 12/31/2005, 48% were younger than 70, 55% were Stage I, 82% were less than 5 years post-treatment, 63% were on hormone therapy. Conclusions: With continued trends in breast cancer survival, specialized long-term surveillance and support is essential to providing quality, comprehensive care that addresses the unique medical needs of these patients. A PA-managed breast cancer survivorship practice within a multidisciplinary breast clinic not only provides forum for such endeavors, but also fosters opportunity for life-long partnership focusing on quality of life, health and well-being. [Table: see text] No significant financial relationships to disclose.

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