The Impact of COVID-19 on Endocrine Treatments from a patient perspective - effect on parenteral testosterone

2021 ◽  
Author(s):  
Emma Walsh ◽  
Suzanna Bates ◽  
Kay Dunkley ◽  
Jane Paramore ◽  
Vicky Ibbotson ◽  
...  
Keyword(s):  
Patient Perspective ◽  
Perspective Effect ◽  
The Impact

Overview of the Patient Perspective at OMERACT 10 — Conceptualizing Methods for Developing Patient-Reported Outcomes

2011 ◽  
Vol 38 (8) ◽  
pp. 1699-1701 ◽  
Author(s):  
JOHN R. KIRWAN ◽  
PETER S. TUGWELL
Keyword(s):  
Clinical Trials ◽  
Experimental Work ◽  
Patient Reported Outcomes ◽  
Patient Perspective ◽  
Methodological Issues ◽  
Instrument Selection ◽  
Patient Reported ◽  
The Impact ◽  
Choice Of Instruments ◽  
The Way

This overview draws out the main conclusions from the 4 workshops focused on incorporating the patient perspective into outcome assessment at the 10th Outcome Measures in Rheumatology (OMERACT 10) conference. They raised methodological issues about the choice of outcome domains to include in clinical trials, the development or choice of instruments to measure these domains, and the way these instruments might capture the impact of a disease and its treatment. The need to develop a more rigorous conceptual model of quantifying the way conditions affect health, and the need to ensure patients are directly involved in the decisions about domains and instruments, emerged clearly. The OMERACT participants voted to develop guidelines for domain and instrument selection, and conceptual and experimental work will be brought forward to revise and upgrade the OMERACT Filter.

scholarly journals P20: Understanding the impact of a cure for hepatitis C from the patient perspective

2013 ◽  
Vol 20 ◽  
pp. 27-28 ◽  
Author(s):  
S Lane ◽  
S Cline ◽  
S Szabo ◽  
K Beusterien ◽  
E Hautamaki ◽  
...  
Keyword(s):  
Hepatitis C ◽  
Patient Perspective ◽  
The Impact

Diet, environment, and mental health

2018 ◽  
pp. 441-458
Author(s):  
Ursula Werneke ◽  
Ingvar A. Bergdahl
Keyword(s):  
Mental Health ◽  
Neurodevelopmental Disorders ◽  
Patient Perspective ◽  
Health It ◽  
Omega 3 ◽  
Psychotropic Medicines ◽  
The Individual ◽  
Nutritional Constituents ◽  
Potential Interactions ◽  
The Impact

This chapter reviews dietary and environmental factors that may affect mental health. It takes a public health angle but examines the individual patient perspective where relevant. In the first part, the chapter looks at the impact of various nutritional constituents on mental health, including omega-3 fatty acids, vitamins, and minerals. Then, it reviews the evidence for diets and ‘superfoods’, which people might try to improve their mental health. Here, the focus is on neurodevelopmental disorders, depression, and psychosis. Potential interactions between foodstuffs and psychotropic medicines are also explored. The final part concerns environmental toxins that populations may be exposed to that may affect mental health, including lead, methylmercury, and various organic compounds.

scholarly journals ‘It is that bad but it isn’t that bad’: Exploring children’s experiences of their mother’s non-terminal cancer with a focus on attachment, resilience and trauma

2018 ◽  
Vol 24 (1) ◽  
pp. 53-68 ◽  
Author(s):  
Laura Tozer ◽  
Jacqui Stedmon ◽  
Rudi Dallos
Keyword(s):  
Narrative Analysis ◽  
Patient Perspective ◽  
Cancer Survival ◽  
Terminal Cancer ◽  
Parental Cancer ◽  
Emotional Wellbeing ◽  
Narrative Perspective ◽  
Narrative Interview ◽  
The Impact ◽  
The Way

Recent years have shown a welcome trend in the number of people surviving cancer. The impact of cancer survival has focused primarily on the patient perspective, and limited research has explored the effect of parental cancer on children. No research to date can be found which explores children’s experiences of parental cancer from a narrative perspective yet the way in which people tell their story is associated with emotional wellbeing. Measures of attachment, resilience and trauma were completed by 10 children (six girls, four boys aged 10–18 years) all of whom have a mother with non-terminal cancer. Each child also completed a narrative interview where they spontaneously described their experiences. Interviews were analysed drawing on narrative and thematic approaches to ensure the structural and performative as well as content of the stories could be understood. Experiences were interpreted within the context of attachment, resilience and trauma. Clinically high levels of trauma were found within this group even for securely attached and resilient children. The narrative analysis corroborated this finding. Implications for services supporting families are discussed.

scholarly journals Chronic non-bacterial osteitis from the patient perspective: a health services research through data collected from patient conferences

BMJ Open ◽  
2017 ◽  
Vol 7 (12) ◽  
pp. e017599 ◽  
Author(s):  
Colen Cooper Gore Silier ◽  
Justina Greschik ◽  
Susanne Gesell ◽  
Veit Grote ◽  
Annette F Jansson
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Pediatric Rheumatology ◽  
Patient Perspective ◽  
Negative Impact ◽  
Patient Survey ◽  
Psychosocial Aspect ◽  
Services Research ◽  
Initial Symptoms ◽  
The Impact

ObjectiveAlthough chronic non-bacterial osteitis (CNO) is an ever-increasingly recognised illness in the paediatric community and the adult healthcare community, a study to assess diagnosing, treatment and the psychosocial aspect of CNO from a large population pool was not available. We aimed to investigate CNO from the patient perspective.DesignHealth services research, patient survey.SettingLudwig-Maximilians-University (LMU) Pediatric Rheumatology Department CNO Conferences held in June 2013 and June 2015.ParticipantsUsing a patient survey developed by the LMU Pediatric Rheumatology Department, 105 patients from ages 5 to 63 years were assessed regarding CNO to include epidemiological data, medical history and treatment, initial symptoms, diagnostic procedures, current symptoms, associated diseases, current treating physicians, absences in school and work due to illness and the impact of illness on patient, family and friends.ResultsActive CNO was reported in 90% of patients present, with 73% being women and 27% being men. An overwhelming majority (70%) reported being diagnosed within 18 months of onset of symptoms; however, the initial diagnoses were wide-ranged to include malignancies in 36% to bacterial osteomyelitis in 30%, where the majority were treated with an antibiotic and/or were biopsied. When asked about the psychosocial aspect of this illness, 83% reported that non-bacterial osteitis (NBO) negatively impacted the family, 79% reported that NBO has negatively affected either school or work and 56% reported a negative impact on friendships.ConclusionDelay of diagnosis, living with differential diagnoses like malignancies and finding specialists for medical care are a few examples of what leads patients into searching for more information. The negative impact on daily life including family relationships, friendships and work/school highlights a need for better psychosocial support such as guidance counselling or psychological support due to three-quarters of patients receiving no such said support.

Progress on Incorporating the Patient Perspective in Outcome Assessment in Rheumatology and the Emergence of Life Impact Measures at OMERACT 9

2009 ◽  
Vol 36 (9) ◽  
pp. 2071-2076 ◽  
Author(s):  
JOHN R. KIRWAN ◽  
STANTON NEWMAN ◽  
PETER S. TUGWELL ◽  
GEORGE A. WELLS ◽  
SARAH HEWLETT ◽  
...  
Keyword(s):  
Patient Perspective ◽  
Educational Interventions ◽  
International Classification Of Functioning ◽  
Measurement Instruments ◽  
Core Set ◽  
Life Impact ◽  
Rheumatic Conditions ◽  
Sleep Questionnaires ◽  
The Impact ◽  
Emergence Of Life

The Patient Perspective Workshop included over 100 researchers and 18 patient participants from 8 countries. Following preconference reading and short plenary presentations, breakout groups considered work undertaken on measurement of sleep, assessing interventions to develop the effective consumer, and assessing psychological and educational interventions. The workshop explored the best way to identify other outcome domains (and instruments) that should be measured in observational or interventional studies with broader intentions than simply altering outcomes captured in the traditional “core set” plus fatigue. Four sleep questionnaires showed promise and will be the subject of further study. The Effective Consumer scale (EC-17) was reviewed and the concept Effective Consumer was well received. Participants thought it worthwhile to measure the skills and attributes of an effective consumer and develop an intervention that would include education in all of the scale’s categories. Assessment of educational and psychological interventions requires a wider set of instruments than is currently used; these should relate to the purpose of the intervention. This principle was extended to include wider measures of the impact of disease on life, as indicated in the International Classification of Functioning, Disability and Health. Life impact measure sets covering domains appropriate to different rheumatic conditions and focused on different interventions might be defined by future OMERACT consensus. Measurement instruments within these domains that are valid for use in rheumatic conditions can then be identified and, in the case of psychological and educational interventions, chosen to fit with the purpose of the intervention.

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