Evaluating the Use of Patient-Reported Non-Routine Events in Pediatric and Radiation Oncology: A Pilot Study

2018 ◽  
Vol 62 (1) ◽  
pp. 538-542
Author(s):  
Kathryn G. Tippey ◽  
Jason M. Slagle ◽  
Ryan K. Cleary ◽  
Debra L Friedman ◽  
Lisa A. Kachnic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Underlying Disease ◽  
Cancer Therapies ◽  
Optimal Care ◽  
Hospital System ◽  
Treatment Pathways ◽  
Care Experience ◽  
Patient Reported

This prospective pilot study evaluated (1) the potential for collecting structured longitudinal data on patient-reported non-routine events (PNREs) (i.e., events that deviate from expected or optimal care) during pediatric and adult radiation cancer therapies and (2) the potential relationship between PNREs, Patient-Reported Outcomes Measures (PROMs), and unplanned treatment events (UTEs). Along with PNREs, data were collected on patient’s background, distress, quality of life, hospital system care experience rating, and treatment intensity, during a 3-month period; UTEs were retrospectively captured through review of patients’ records. Initial results suggest a relationship exists between both PNREs and safety-relevant PNREs with patient distress, quality of life, and care experience ratings. UTEs occurred more often in pediatric patients and were primarily related to patients’ underlying disease. This systems-safety approach to identifying at-risk points in treatment pathways has the potential to provide actionable information for the mitigation of shortcomings in cancer therapy.

scholarly journals Prevalence of Low-Value Care and Its Associations with Patient-Centered Outcomes in Dementia

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Models Of Care ◽  
Adverse Outcomes ◽  
Future Research ◽  
Patient Centered ◽  
Treatment Pathways ◽  
Patient Reported ◽  
Evidence Based Treatments ◽  
Related Quality

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.

Health-related quality of life and adequacy of dialysis for the individual maintained on peritoneal dialysis

2020 ◽  
Vol 40 (3) ◽  
pp. 270-273 ◽  
Author(s):  
Fredric O Finkelstein ◽  
Marjorie WY Foo
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Patient Reported Outcome Measures ◽  
Health Related Quality ◽  
Optimal Care ◽  
Patient Acceptability ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

The goal of care of the peritoneal dialysis (PD) patient should be directed at adjusting therapy to maximize the patient’s health-related quality of life (HRQOL). Incorporating the routine assessments of HRQOL into the care of PD patients is important and should serve as an essential marker of the adequacy of dialysis and help the dialysis staff design the optimal treatment regimen for each patient. HRQOL is best assessed with patient-reported outcome measures (PROMs). How best to incorporate these PROMs into the routine care of the PD patient is not clear in terms of the best instruments to use, frequency of measurements, patient acceptability, and how to translate these assessments into improvements in patient care. Nevertheless, incorporating routine assessments of HRQOL into the care of PD patients is essential if the dialysis team is to provide optimal care; it is an area that is receiving increasing attention and is ripe for further study and investigation.

scholarly journals A Novel Digital Patient-Reported Outcome Platform for Head and Neck Oncology Patients–-A Pilot Study

2016 ◽  
Vol 9 ◽  
pp. CMENT.S40219 ◽  
Author(s):  
Maria K. Peltola ◽  
Joel S. Lehikoinen ◽  
Lauri T. Sippola ◽  
Kauko Saarilahti ◽  
Antti A. Mäkitie
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Side Effects ◽  
Head And Neck ◽  
Cancer Patients ◽  
Early Stage ◽  
Patient Reported Outcome ◽  
Patient Reported

Introduction The patient's role in toxicity reporting is increasingly acknowledged. There is also a need for developing modern communication methods between the patient and the medical personnel. Furthermore, the increasing number of head and neck cancer (HNC) patients is reflected in the volume of treatment follow-up visits, which remains a challenge for the health care. Electronic patient-reported outcome (ePRO) measures may provide a cost-efficient way to organize follow-up for cancer patients. Materials and Methods We tested a novel ePRO application called Kaiku®, which enables real-time, online collection of patient-reported outcomes, such as side effects caused by treatment and quality of life. We conducted a pilot study to assess the suitability of Kaiku® for HNC patients at the Department of Oncology, Helsinki University Hospital, Helsinki, Finland. Patients used Kaiku® during and one month after radiotherapy to report treatment-related side effects and quality of life. Two physicians and a nurse performed the practical electronic communication part of the study. Results Five of the nine patients agreed to participate in the study: three of them had local early-stage larynx cancer (T2N0, T1aN0, and T2N0) and the remaining two patients had early-stage base of tongue cancer (T2N0 and T1N2b). The degree of side effects reported by the patients via Kaiku® ranged from mild to life threatening. The number of outcome data points on patients' progress was significantly increased, which resulted in a better follow-up and improved communication between the patient and the care team. Conclusions Kaiku® seems to be a suitable tool to monitor side effects and quality of life during and after radiotherapy among HNC patients. Kaiku® and similar tools could be useful in organizing a cost-effective follow-up process for HNC patients. We recommend conducting a larger study to further assess the impact of an ePRO solution in routine clinical practice. • ePRO solutions may aid in the follow-up for cancer patients. • They seem suitable to monitor, for example, side effects and quality of life. • These systems ensure fast patient-driven reporting.

scholarly journals The Impact of Payer and Reimbursement Authorities Evidence Requirements on Healthcare Solution Design for Muscular Dystrophies

2020 ◽  
Author(s):  
Maximilian Lebmeier ◽  
Fleur Chandler ◽  
Josie Godfrey ◽  
Jonathan Dando
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Care Pathway ◽  
Standards Of Care ◽  
Optimal Care ◽  
Healthcare Decision Making ◽  
Key Stakeholders ◽  
Patient Reported ◽  
The Impact

For rare diseases that start early and are slowly degenerative, despite the desire to create solutions that benefit the patient, healthcare system realities can be prohibitive to generate an affordable and effective solution. The optimal care pathway for muscular dystrophy, similar to all degenerative diseases, would be a rapid and accurate diagnosis, pathophysiological confirmation and application of therapeutics that slowly replaces damaged tissue with healthy tissue, supported by adjuvant solutions that stimulate the tissue to repair and reduce inflammation and fibrosis. This would increase the lifespan and quality of life in an affordable way. For all diseases, two key stakeholders, the paying entity and the patient, fundamentally define whether revenue can be generated. Healthcare decision-making commissioners who agree to pay for the product and patient-reported outcomes jointly inform whether the intervention increases the quality of life related to existing standards of care and, therefore, if it should be paid for. This chapter explains why this has not yet happened and efforts initiated to correct this and addresses how the components and data used in this decision-making process could be updated, adapted and integrated into every stage of the development of solutions and how organisational innovation may enable the field.

Health-Related Quality of Life in University Dance Students

2018 ◽  
Vol 33 (1) ◽  
pp. 14-19 ◽  
Author(s):  
Hayley M White ◽  
Johanna M Hoch ◽  
Matthew C Hoch
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Internal Consistency ◽  
Performing Arts ◽  
Health Related Quality ◽  
Outcome Instrument ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Injuries are common among dancers and may negatively affect health-related quality of life (HRQL). The modified Disablement in the Physically Active Scale (mDPA) is a generic patient-reported outcome instrument that could be used when providing care to patients participating in performing arts. The objective of this pilot study was to examine the internal consistency of the mDPA and assess overall HRQL using the mDPA in university dance students. Thirty-one female university dance students completed the mDPA during one data collection session. Higher scores on the Physical Summary Component (mDPA-PSC), the Mental Summary Component (mDPAMSC), and mDPA-Total indicated increased disablement. The internal consistency was determined using Cronbachs alpha. The mDPA-Total, mDPA-PSC, and mDPAMSC scores were examined descriptively using mean and standard deviations. Individual item responses were also examined. The proportion of university dance students with clinically relevant levels of disablement on the mDPA-Total was examined using a previously established minimally clinically important difference value. The internal consistency for the mDPA-MSC (a=0.91) and mDPATotal (a=0.90) was excellent and good for the mDPA-PSC (a=0.88). A large proportion (71%) of university dance students demonstrated clinically relevant levels of disablement despite fully participating in dance-related activities. Pain, impaired motion, and stress were the greatest contributors to increased disablement in these individuals. The mDPA scores observed in this pilot study indicate that many dance students experience levels of disablement and decreased HRQL which may warrant physical and mental intervention. Clinicians providing healthcare services to performing artists should consider using the mDPA to provide patient-centered care.

scholarly journals Holistic approach in the management of PCOS: a pilot study of an online PCOS-reversal program

2018 ◽  
Vol 7 (7) ◽  
pp. 2829
Author(s):  
Manthan N. Mehta ◽  
Mahesh Jayaraman ◽  
Sharda Agarwal
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Patient Reported Outcomes ◽  
Polycystic Ovary ◽  
Holistic Approach ◽  
Physical Symptoms ◽  
Herbal Products ◽  
Complex Disorder ◽  
Patient Reported

Background: Polycystic ovary syndrome (PCOS) is a complex disorder that can be managed but not permanently cured. Each woman has her own PCOS symptoms and its own root causes. A number of medications are prescribed to women with PCOS. However, a holistic approach could be the best way forward in managing a disease as complex as PCOS. Authors conducted this pilot study called the Sepalika 5-petal PCOS reversal program which consisted of individualized diet plans, magnet acutherapy, fitness regimens, dietary supplements and herbal products to evaluate whether these interventions improve PCOS symptoms, insulin resistance and hyperandrogenism.Methods: A total of 30 patients were recruited online from all parts of India using the PCOS symptom quiz. Various baseline investigations were performed at recruitment. They were suggested personalized diet plans, followed by exercise videos, magnetic acutherapy and herbal and micronutrient supplements. The program spanned over a period of 90 days and patients outlook and quality of life were also assessed at the end of the program.Results: The main goal of most participants was improvement in weight and energy issues, and regularization of periods. Each of these goals were achieved in all participants of the program. Patient-reported outcomes showed a definite improvement in the quality of life of the participants at the end of 90 days.Conclusions: PCOS is a physical - sexual, psychological and social syndrome; therefore, it is necessary to taking a more holistic approach to patient care beyond treating physical symptoms. Larger studies with more objective and subjective endpoints is the way forward.

scholarly journals “I have SMA, SMA doesn’t have me”- A Qualitative Snapshot Into the Challenges, Successes, and Quality of Life of Sma Adolescents and Young Adults

2020 ◽  
Author(s):  
Allison Joy Mazzella ◽  
Mary Curry ◽  
Lisa Belter ◽  
Rosangel Cruz ◽  
Jill Jarecki
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Young Adult ◽  
Transition Period ◽  
Muscular Atrophy ◽  
Adolescents And Young Adults ◽  
Adolescent And Young Adult ◽  
Optimal Care ◽  
Patient Reported

Abstract Background: With the approval of two treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a clinical meaningfulness survey to capture information, quantitatively and qualitatively, on the quality-of-life of this population. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the open-ended section in the survey along with the video contest findings are reported here.Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the open-ended section of the survey, while six individuals, mostly type II, participated in the SMA awareness video contest. In both settings, individuals detailed a wide variety of challenges, including but not limited to forming or maintaining close relationships, feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, in the survey, an overwhelming number of respondents (39%) requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to capture their insights in order to affect change.

scholarly journals Patient reported outcomes of symptoms and quality of life among cancer patients treated with palliative pelvic radiation: a pilot study

2011 ◽  
Vol 4 (1) ◽  
Author(s):  
Marte G Cameron ◽  
Christian Kersten ◽  
Rene van Helvoirt ◽  
Gudrun Rohde ◽  
Sophie D Fosså ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Pelvic Radiation ◽  
Patient Reported
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